Inclusion Champions Project report
‘Inclusive Education, Disabled People’s Organisations and Capacity Building for Change’. This report provides some reflections from an Inclusion Champions Project funded by the City Bridge Trust.
Inclusive Education, Disabled People’s Organisations and Capacity Building for Change.
This report provides some reflections from an Inclusion Champions project funded by the City Bridge Trust. This supported ALLFIE to successfully host the Inclusion Champions Network (ICN) made up of 18 London-based Disabled People’s Organisations (DPOs), working with young people and their families, Local Authorities and other young people’s services.
The focus was to facilitate work around inclusive education and to capacity build DPOs to better engage with young Disabled people. Based on our work, this document will offer here some suggestions to other DPOs considering shared capacity building and campaign work that is about inclusive education and involvement of young Disabled people as assets. This includes both a structure for planning social change activities, along with links to learning resources produced as part of this project. At the end of this document, we also note some ideas for future work that we feel will help us work together with DPOs and young Disabled people to achieve inclusive education.
- Disabled People’s Organisations
- Inclusive Education
- Capacity building and building capacity for change
Disabled People’s Organisations (DPOs) are unique collectives that provide both peer support services and collective action. We demonstrate solidarity in our drive for inclusion, and connect communities to bring together different experiences and individuals within the Disabled People’s Movement. They represent, both at the same time, a social change movement and a vibrant community sector. While in recent years some progress has been made in inclusive education, there is still a way to go.
Inclusive education is a human right, as set out in Article 24 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Being included in society is the key to Disabled people being embraced as equal citizens. Non-Disabled people need to grow up, to learn, play and work with Disabled people as friends, classmates and family members. Though Disabled young people and children have some protections and rights to inclusive education, these do not currently work as they should.
The Alliance for Inclusive Education (ALLFIE) want Disabled People’s Organisations to be part of the campaign for the right of all Disabled people to be fully included in mainstream education, not segregated from our peers, our friends, our families, our communities. ALLFIE’s vision is a fully inclusive education system that welcomes all, with the ultimate goal of ending all forms of segregated education for Disabled pupils and students. ALLFIE believes that DPOs can play an important role in achieving inclusive education by increasing involvement with young Disabled people and children in the movement.
Based on the learning and reflections of the City Bridge Trust project this document presents some information about Disabled People’s Organisations, inclusive education and capacity building for change. This includes an approach to planning and organising for change, as well as a number of links to materials produced as part of this project. It sets out how to involve the right people, how to plan actions and campaigns, and links to wider issues by recognising the intersect of ableism, racism, sexism and classism. A number of ideas for future work are also recommended.
Disabled People’s Organisations (DPOs)
Disabled People’s Organisations (DPOs) are run and controlled by Disabled people, focused on equality and human rights. They work to support Disabled people to achieve inclusion.
A DPO can be defined as an organisation whose constitution requires it to have a membership and managing board with a majority of Disabled people. Its objectives will be the rights and equality of Disabled people. DPOs subscribe to the Social Model of Disability and are committed to the human rights of Disabled people. DPOs work for the empowerment of Disabled people either implicitly or explicitly.
DPOs, have grown and developed since the 1970s. They are unique social change organisations focused on issues relevant to Disabled people through the use of a range of activities. In the 1980s the first UK Centres for Independent Living (CILs) were established in Hampshire, Derbyshire and Greenwich. Run and controlled by Disabled people, CILs are based on a number of principles that if available to Disabled people enable self-determination and personal autonomy, so as to be able to participate equally.
These include, having access to accessible information, advocacy, adequate housing, PA support, equipment, transport etc. The key point is that unless Disabled people are involved in decisions and policies about their lives, nothing changes.
The UK has an ever-increasing number of voluntary sector organisations, ranging from small community groups to international charities with bases in many countries. DPOs represent an important movement within this sector. The impact of DPOs has been huge, furthering a radical social policy agenda and redefining meanings of social care, health, independent living and inclusion.
The added value of DPOs comes through the leadership that emerges from Disabled people coming together, sharing experiences and developing practices of inclusion. This facilitates a unique organisational culture that embraces and values the voices and experiences of Disabled people from the perspective of equality and dignity, rather than that of personal and medical tragedy.
For a recent view on DPOs see the report ‘Understanding the needs of DDPOs in England’. This provides information from 100+ DPOs about current issues and what is needed to strengthen the capacity to tackle the deepening structural inequalities faced by Disabled people in a post Covid world.
The right to inclusive education is set out in Article 24 of the UN Convention on the Rights of Persons with Disabilities and Sustainable Development Goals, Target 4. The inclusion of young Disabled people and children is key to them being embraced as equal citizens as they become adults. There are a number of concerns about UK education and equality legislation not following the rules on the international agendas, and how segregated education occurs in practice today.
ALFFIE’s current campaigning work is focused on the government’s anti-inclusive education reforms, which are proving to be disastrous and harmful for Disabled pupils’ and students’ right to inclusive education in mainstream education settings. Local authorities are taking funds from mainstream schools to promote, create and pay for expensive segregated education placements, reducing the capacity of mainstream schools to welcome a wide range of pupils and students from different backgrounds.
An increasing focus on academic attainment in public exams through league performance tables, puts considerable pressure on schools, colleges, and universities to standardise learning and assessment practice. For Disabled people with diverse learning styles, the accessibility of education settings is a concern, as there is now greater segregation and exclusion of Disabled pupils and students from mainstream education.
The Alliance for Inclusive Education (ALLFIE) is keen to support Disabled People’s Organisations to be part of the campaign for the right of all Disabled people to be fully included in mainstream educational settings and learning. It supports educational and learning settings that do not segregate us from our peers, our friends, our families and our communities. DPOs in local communities are well placed to support young Disabled people and children.
Capacity building and building capacity for change
Capacity building and building capacity for change are development activities, sets of resources, or forms of assistance provided to organisations in order to help them improve their effectiveness and boost performance. This usually focuses on management, leadership and governance, and organisational systems, but equally can be about developing campaigns, setting goals and working to achieve those, as we have seen in the #MeToo and Extinction Rebellion movements. Based on our work on the Inclusion Champions Project, below we set out some ideas about how we think DPOs can engage with young Disabled people on the issue of inclusive education. The ICN involved exploring how to involve the right people, planning for action, connecting to wider networks, creating resources and ideas, and being influencers for change.
Involving the right people –
It is important to remember also that it is people that make change happen. To organise and bring about the change you want it is useful to involve different types of insights and experiences. This includes centring people with lived experience of intersectionality, people with ideas, and people with power and influence. Sometimes you may find people hold these experiences and insights at the same time, sometimes only one or two. Additionally, people may not be able to be open with their experiences or may not recognise how valid their expertise is.
The following illustrates how this might be applied to the campaign for Inclusive Education.
- Lived experience – Disabled young people and children who are (or have) experienced segregation in school or college. This might be as a result of being placed in a special school, or being excluded as a result of not being able to attend some lessons within mainstream education. It may also be to do with not being able to access learning materials or socialise with peers because of a lack of accessibility in the learning activity or environment.
- Ideas for change – Disabled people, supporters or allies with knowledge about the social model, intersectionality, human rights and specifically Article 24 of the UNCRPD. Applying these ideas, in an accessible and meaningful way and facilitating those with lived experiences to imagine alternatives.
- Power and influence – Those in influential or decision-making roles who can help to realise and make alternatives happen. This might be those who can articulate the need for change, persuading others of the unquestionable rationale and moral argument. Or it can be those who have decision making powers and who can allocate resources, change structures and reorganise policy and practice.
Planning for action
Understanding what the problem is, being clear about how and why it can be different and knowing what needs to be done in order for it to happen, is key to achieving change. The following maps out some steps, poses some key questions, and gives some useful links for DPOs to consider when planning and organising actions about inclusive education.
- Principles – Building an understanding, by centring the lived experience of segregated education and the arguments against it, is crucial in developing campaigns that look to change it.
What is the impact on people? What harm does it do? Why is it wrong?
Here is a guide to the UNCRPD
Here is an introduction to the Social Model of Disability in the context of inclusive education
- Preparation – With a clear idea about what’s wrong, and why it should be different, change and aspects of it can be imagined and articulated. This does not need to be in detail, rather it can be a shared description of the destination. Change can be both big and small, local and global, for an individual or a wider group. It can be about access in a school, access getting to a school or the standardised delivery and assessment of learning.
What is wrong? What needs to change? How can it be different?
- Action – Identifying how change could be made and framing the message clearly for your audience is important. Knowing what drives and motivates them, and using this to plan an action, can help it be successful. Campaigning actions can be brief or lengthy, they can be a posted letter that spells out what you want, a petition of many, or a demo with placards in the street.
What are we asking for? What exactly do we want? Who needs to hear what we are saying? How do we make them act?
See here for the ‘Educate Don’t Segregate’ and other campaigns by ALLFIE
- Being local and global – Recognising the intersectionality of Disabled people and how their organisations are connected to wider communities across the globe is important for several reasons. Knowing that you are not alone, that you are part of a community that shares your experiences of barriers and struggle, and that has a passion for an inclusive future brings strength. The connections come from sharing experiences, sharing information and knowledge with local peers about human rights and the resistance that is occurring elsewhere.Being local validates shared experiences of barriers and exclusion. It also helps to build communities for an inclusive world. Using the lens of human rights to recognise how social change is both possible and probable for Disabled people and their organisation can be big motivator in the campaign for inclusive education.Here is some information about the ‘European Convention on Human Rights’ and its relevance to inclusive education
Based on our work, and the feedback of those we engaged with, we present the following as ideas for future work. This, we believe, will assist DPOs to engage with young Disabled people, to ensure their voice is embedded within their work. In turn this will help further the campaign for inclusive education, and bring an end to the circumstances that continue to exclude many young Disabled people and children from experiencing inclusive education.
- Develop a young Disabled people and children’s network – create regular opportunities to provide updates and learning on human rights, Disabled people’s movement issues and social change. Recognise young people as assets, so that they can develop as leaders and initiate and run successful social change campaigns.
- Create opportunities for DPOs and young Disabled people and children to work together – build attendance at the Inclusion Champions Network of DPOs across England. Support young people and DPOs to develop local activities and action.
- Identify current gaps in peer support and advocacy for young Disabled people and children – review the commissioning activity of these services to explore the current and future roles of DPOs.
- Give space to Disabled young people and children to become leaders – profile current issues about intersectional identities, exploring distinct and shared areas of oppression and opportunity, across race, sex, gender, faith, culture, Disability and other areas. https://youtu.be/95Q5g9-Hj5g
- Connect intergenerationally – create opportunities for dialogue between old and young experiences within the Disabled people movement, exploring previous challenges and successes, as well as developing a future manifesto.
This report summarises some key reflections and points of learning from the Inclusion Champions Project funded by the City Bridge Trust. Through this we were able to work with Disabled People’s Organisations (DPOs) and young Disabled people.
This enabled us to better understand some of the issues preventing them from engaging more actively on work about inclusive education. Many DPOs want to work with young people, but often are not able to create the opportunities to do so. ALLFIE’s Inclusion Champions work has shown how this is possible, and what benefits it can offer to social change work in this area.
Based on this work we offer here some suggestions to DPOs when considering capacity building and campaign work that is about inclusive education and looks to involve young Disabled people. These include both structure for planning social change activities and links to learning resources produced as part of this project.
Here are some resources created by young people:
- Our Voice
- Online University Empowers Disabled Students
- 50 years since Handicapped Children Act
- The CripTales and Inclusive Education
- ‘Our Voice’ Project Participants interview Baroness Tanni Grey-Thompson
- Judy Heumann: ‘The battle is so much bigger than we thought it was’
- Returning to School After Lockdown
- Learning in Lockdown
- ‘Like a bird released from a cage, I am free to fly in the open fields’
Covid-19 Inclusive Education guide
ALLFIE has co-produced this guide with parents of Disabled students and Inclusion Champions Network members, to help Disabled students and their families navigate mainstream education during the Covid-19 pandemic.
ALLFIE has co-produced this guide with help from parents of Disabled students and members from our Inclusion Champions Network, to help Disabled students and their families navigate mainstream education during the Covid-19 pandemic and help respond to inquiries. The outbreak has provided us with a rare opportunity to consider what is important in inclusive education.
During lockdown, there has been a need for more contact between parents, schools and colleges. This has provided us with a real opportunity to develop stronger relationships between children, parents and education staff, with positive outcomes. We hope this guide will support the ongoing good relationships between everyone, with the aim of obtaining a greater understanding of Disabled children and young people’s needs and rights.
We have focused on the major Covid-19 issues, highlighted in ALLFIE’s Survey Report: The Impact of Coronavirus on Disabled People’s Education.
- The Social Model of Disability and inclusive education
- Knowing your rights
- Finding support to exercise your rights
- Making good use of formal assessment procedures
- Returning to school and college
- Blended learning experiences
- Qualification assessments
- Combating social isolation
- Funding sources
Impact of Sexism on Black Disabled Women and Girls
This presentation was originally delivered by Michelle Daley to mark International Women’s Day 2021.
- What does Sexism, Disablism, Racism and Intersectionality mean?
- What are the problems Black Disabled Women and Girls in the UK experience?
- What is the Impact of Sexism for Black Disabled Women and Girls?
- What do we need to do to stop intersectional inequality and discrimination?
This resource was first delivered as a presentation by Michelle Daley (ALLFIE Director), to local Labour Party members in Islington, for International Women’s Day March 2021.
Please visit ALLFIE’s Disabled Black Lives Matter (DBLM) pressure group, for more information.
“This resource is based on our human rights. We know that the entrance door for many individuals to education and learning is not open, or is layered with complications. It is from this context I will explore the experiences of Black Disabled women and girls, and how different identities determine our treatment, privileges and how we are privileged/disadvantaged within society.
I will begin by presenting some questions for discussion, alongside definitions of key terms, followed by accounts of two important Black Disabled Women in our history and intersectional struggle for equality – Mary Prince and Elizabeth Gertrude Suggs.
Finally, I will discuss the problems for Disabled Black women and girls in the UK today, and what we can do to help eradicate these”
Michelle Daley, Alliance for Inclusive Education (ALLFIE) Director
Racial and intersectional inequality, and under-representation of people of colour in Disabled People’s Organisations
‘You can’t get rid of one oppression without getting rid of all of them’
This toolkit includes visual minutes from a series of discussion groups in 2021 by ALLFIE’s Disabled Black Lives Matter pressure group.
- Key concepts
- Key questions
- Key ideas for change
1. Key concepts
Oppression, injustice, inequality, abuse, violence against people who share characteristics, because of: skin colour, cultural backgrounds, faith or life style, though definitions are blurry and politically contested.
Oppression against disabled people. Disability is often used to indicate a broken, flawed body or mind, though many disabled people assert a social model of disability that identifies social barriers as disabling, not their impairments or medically defined conditions.
Discrimination or inequality resulting from different treatment or responses. This can be big and small, fatal and limiting, structural and interactional. Creates exclusion, negative outcomes and prevents individuals and groups from social participation.
Having greater access to power and resources than black people in the same situation.
Forms of violence and oppression occurring in the everyday towards someone on the basis of their identity or other characteristics. Includes, Micro-assault: explicit discriminatory actions; Microinsult: demeaning a person’s identity, often subtly and unknown by the perpetrator; Micro-invalidation: dismissing the feelings, or experiences of a person belonging to a particular group.
A way of looking at the combination of a persons’ identities that can result in forms of discrimination that cannot be reduced to single issue understanding. The consequence cannot be understood as not racial injustice plus disability discrimination, but rather oppression multiplied, and as something experienced in isolation.
Kimberlé Crenshaw suggests three types of intersectionality to understand the experience of oppression:
– society works to combine and interlock oppressions, so that negative consequences are experienced in multiple ways.
– identities are kept separate and maintained as different within politics.
– imagery that favours single issues, and maintains negative stereotypes.
– Histories of oppression interlock and prop each other up. For example, the exploitation of care workers through low pay and the isolation of disabled people are dependent on each other.
2. Key questions.
What are the points of struggle and solidarity?
Power and privilege are gained through the oppression of others. Systems of inequality are interlocked with each other, understanding how these work in context is crucial for resisting them.
How do we understand who is visible and who has the power?
Who is privileged? Who is erased? Whose voice is missing? And how do we enable, share and give power away?
How do we move to achieving social justice for all?
For example, a Black Disabled boy who has an Education, Health and Care plan has a 58% chance of receiving a fixed period exclusion. What does an intersectional approach to making a more inclusive curriculum look like?
3. Key ideas for change
1) Create opportunities for more conversations about race and intersectionality experienced by disabled people to document the specific and represent different experiences of people within the rights movement.
2) Develop practical strategies to tackle the injustices and inequalities arising from the intersectional link of race, gender and other intersectional identities experienced by disabled people
Being Seen, Being Heard: Empower Young People in the Disability Rights Movement
A resource for voice, rights and empowerment of Disabled children and Young people: a guide for activism by the RIPSTARs, co-produced by ALLFIE.
“This resource is an example of what can be done when generations of Disabled people work together to create change. Together we are stronger.
If you are a Disabled Young person reading this we hope that this resource helps you to see that you are not alone, you are not a ‘problem’ or something to be ‘fixed’ or someone to be ‘excluded’. You have rights, you have a voice and you have allies.” (The RIP:STARS)
- The Being Seen, Being Heard project
- Discrimination of Disabled people – Why activism is important
- Learning Our History
1 Becoming Aware
2 Building your leadership skills
3 Building a Culture and Making Change
4 Practical steps to bring generations of Disabled people together
“Being a RIP:STAR has been all about making our voices heard, speaking up, having confidence and becoming empowered as Young Disabled people. If you are a Disabled Young person reading this we hope that this resource helps you to see that you are not alone, you are not a ‘problem’ or something to be ‘fixed’ or someone to be ‘excluded. You have rights, you have a voice and you have allies.“
RIP:STARS stands for Research Into Practice: Skilled Team with Ambition, Rights and Strength. We are all Disabled young people aged 18 to 25 and we are from Coventry, in the West Midlands of England. We started our research group in 2017 because we wanted to try and make a difference to Young people’s lives.
Since then we have tried to change how people view and treat Disabled Young people through our research, training and activism. You can learn about our work on our website
The RIP:STARS work is different because it is research about young disabled people done by young disabled people. We lead everything in our research projects, and we make our own decisions about what we do, and how we do it. We work within the Social Model of Disability and a rights-based approach to challenge any barriers we face as young people, and as disabled young people. We know that we have rights, and that disabled children and young people have to fight for their rights every day.
The RIP:STARS for this project are: Ben, Eva, Jordan and Tom. Learn more about RIP:STARS work
ALLFIE (Alliance for Inclusive Education) was set up in 1990, and is an organisation led by Disabled people. ALLFIE campaigns and lobbies for inclusive education within mainstream settings. Over the years ALLFIE has led work to help promote and raise awareness to the wider society about the importance of inclusive education in helping to create inclusive communities.
In this project we partnered with ALLFIE to co-produce this project, it was important to work with a Disabled Peoples organisation because we wanted to learn from Disabled People Led Organisations. We wanted to hear about the history of the Disability Rights Movement. We wanted to learn about how Disabled People have fought for their rights and won rights in some areas but in other areas rights are still denied. We wanted to see if our struggles in education and in life in the year 2020 are the same or different to older generations of disabled people. As disabled young people we are not taught about our history or our rights. We think this is very wrong and believe it should be part of the curriculum.
The Being Seen, Being Heard project was funded by Big Lottery (NL Community Fund)
We wish to thank the following Disabled activists who have supported us, and who gave their time to us freely:
Seán McGovern, Tara Flood, Michelle Daley, Ruth Bashall, Iyiola Olafimihan, Yewande Omoniyi, Rebecca Yoe, Mark Harrison, Zara Todd, Lani Parker, Justine Jones, Saâdia Neilson, Rachel O’Brien, Peadar Odea, Andrew Lee, Bob Williams-Findlay,Miro Grffiths, John Kelly, Armineh Soorenian and Joseph Whittaker.
We would also like to thank Stephen Hodgkins for his fantastic graphics and to Nic Crosby for his digital notetaking during the workshops.
We would like to dedicate this resource to Seán McGovern who sadly passed away in 2020. Seán shared his experiences of activism with us, he inspired and encouraged us. We are thankful to have met him.
- Learn from the past to create future opportunities
- Challenge negative stereotypes about who we are as Disabled people
- Work together across generations to fight for equality, inclusion and our rights.
You might be reading this and wondering who you are, how you fit in, or what your future life might be. You might sometimes feel angry, lonely or that you have experienced injustice and discrimination but you don’t know what to do about it.
This resource has been developed to guide you on your journey and introduce you to a world of possibilities. You know the saying ‘hindsight is a wonderful thing?’
Well, we have asked disabled people to look back and think about their life, their journey, and how they became activists and disabled leaders. We wanted to learn from them. We found out that they also wanted to learn from us.
We brought together disabled people from across generations, with different lives and experiences to talk about the barriers disabled people face and what disabled people have done to challenge discrimination. We also wanted to talk about what still needs to be done, and how young disabled people can fight for their rights.
Disabled activists aged from 18 – 70+ years came together in five workshops during 2019/2020 to create change. We worked with ALLFIE to plan, design and deliver the workshops. We talked about how we can: learn from the past to create future opportunities challenge negative stereotypes about who we are as disabled people work together across generations to fight for equality, inclusion and our rights.
In this guide we hope to offer you some brilliant insights that might inspire and encourage YOU to become an activist, or join a disabled young people’s group or the Disability Rights Movement. And to realise that you are not alone and you have allies all over the world.
Or, as a starting point, to think differently about disability and discrimination. To support you to speak up for your rights, inclusion and independence, and be part of decisions being made about you.
Despite there being laws to protect disabled people across the world, many disabled people continue to face discrimination and are treated differently or badly. Below are some examples:
- Many disabled children and young people do not receive the support they need in school, college or university.
- Many disabled children and young people do not get opportunities to be part of their local community.
- Many disabled children and young people have to wait a very long time to get help with things like speech and language therapy or physio, many do not have wheelchairs that are the right size for their age.
- Disabled children and young people are much more likely to be bullied than non-disabled children.
- Disabled children and young people are much more likely to be excluded from school, college or university.
- Disabled people are twice as likely to be unemployed as non-disabled people.
These differences are often due to negative and prejudiced attitudes, and barriers such as inaccessible buildings, inaccessible transport or not being given information, all of which stops disabled people’s full inclusion in society.
Many thousands of disabled children and children with Special Education Needs (SEND) are ‘awaiting provision’ which means a place in school or college. Thousands of disabled children and young people end up being educated at home because schools or colleges do not meet their needs.
During the Covid-19 pandemic, many disabled people had a difficult time getting food or medicine and much of the information published by the Government was not made accessible to disabled people. For example, many people campaigned because there were no British Sign Language (BSL) interpreters at Government briefings about Covid-19, leaving disabled people disadvantaged. Many disabled people have said that they felt abandoned during the pandemic, with many having their care and support cut.
The facts above are difficult to learn about, they made us angry and they are the reasons why we need change.
During the Covid-19 pandemic and first lockdown in England (Spring/Summer 2020), ALLFIE distributed a survey to find out about the impact on Disabled children and Young people’s education. The findings showed that:
83% of parents were expected to home school their disabled children, yet 54% of parents had not received any support from either the local authority or school to help with home schooling, and a further 34% of parents had received some (but not a sufficient level of) support to help them.
Although the government announced that they have put money into supporting home-schooling and providing laptops, the support is not accessible for many who are disabled. Many children and young people require assistive technology, adaptive hardware and support in order for them to use technology.
The experience of the pandemic for disabled children and young people has been very difficult, with physical distancing and restrictions impacting on the level of support and services that they receive. This has meant a year of loneliness, isolation, mental health needs, and further exclusion from education, friendships and society which we know will take a long time to recover from.
The effect of the Covid-19 pandemic on our research project
After piloting our face-to-face workshops with Disabled leaders, we started to plan more workshops and then the country went into lockdown. This impacted on how we planned to deliver the project, so we agreed to deliver the workshops online. At the time everyone was new to working online so we were concerned with how this would work but we were surprised with the number of Disabled activists that engaged in the project. Initially we expected 12 people but we ended up with 19 leaders. Meeting these people for the first time online was not
easy for us and we would have preferred to have physically met them – but we are grateful to them and the workshops were very successful.
We collected a lot of information.
Learn from history; it is still relevant today and relevant to what we are still fighting for.
There are many Disabled activists around the world fighting for change. Their struggles, stories and their successes have inspired us to fight – however, small or big we can all make a difference. We think it is important to learn about these struggles and successes.
Here is a timeline of important names, events and laws in the history of disability rights in the UK and it was great hearing the Disability leaders mention some of these defining moments in history which they had been a part of, such as the fight for disability discrimination legislation.
Timeline of defining moments in UK Disability Rights history
- 1913 Mental Deficiency Act required children and adults who were identified as ‘defective’ to be institutionalised (separated/locked up away from their community)
- 1939 The Nazi euthanasia programme murdered 240,000 disabled people.
- 1970 The Chronically Sick and Disabled Persons’ Act required local authorities to improve services for disabled people.
- 1972 The Disability Rights Movement is born – Paul Hunt’s letter is published in the Guardian newspaper calling for equality for disabled people and asking others to join him. His letter inspires the start of the struggle against discrimination.
- 1970s Disabled people created the 12 Pillars of Independent Living.
- 1976 Union of Physically Impaired Against Segregation (UPIAS) was set up, the first organisation to argue for a ‘Social Model of Disability’. The social model of disability says that people are disabled by social barriers, not their health issues or impairments. It is the social barriers that disabled people face that restrict them from taking part in society, not their diverse bodies or minds.
- 1978 The British Council of Disabled People’s Organisations was set up to campaign for Disabled people’s rights.
- 1981 International Year of the ‘Disabled’ – An international conference in this year, which attempted to exclude Disabled people from its discussion. This led to the first global network of Disabled people known as ‘Disabled People’s International’ with a slogan ‘Nothing About Us Without Us’.
- 1981 The Education Act paved the way for the inclusion of Disabled children with ‘special needs’ during the United Nations International Year of Disabled People.
- 1991 The UK Government ratified the UN Convention on the Rights of the Child – disabled children are hardly mentioned but it does give children rights to be involved in decisions being made about them.
- 1982–95 There were 17 attempts made to introduce legal civil rights for Disabled people.
- 1995 The Disability Discrimination Act (DDA) made discrimination against disabled people illegal and was an important step forward in the campaign for full civil rights for all disabled people.
- 2000 The Disability Rights Commission was set up with Disabled people forming a majority of its commissioners.
- 2009 The UK Government ratifies the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
- 2010 The Equality Act came into force which legally protects people from discrimination in the workplace and in wider society. It sets out the different ways in which it is unlawful to treat someone.
- 2014 The Children and Families Act came into force, introducing Education, Health and Care (EHC) plans for Disabled children & young people 0–25 years. EHCPs outline educational provision to the meet the needs of a child or young person. They are meant to secure the best possible outcomes for children across education, health and social care, and to prepare them for adulthood. Disabled children and young people were given the right to be included in the development and review of their EHCP.
- 2014 The Care Act states that councils need to assign a personal budget to all people who are eligible for support. The personal budget is the amount of money needed to cover the cost of the support for which a person is eligible.
- 2017 UNCRPD Committee published its Concluding Observations based on the first monitoring of the UK Government’s implementation of the UNCRPD. The Committee’s findings were damning and said that the Government’s current approach to disabled people in the UK is causing a ‘human catastrophe’. The Committee also reminded the UK Government that inclusive education is ‘not a choice, it is a human right’.
- 2019 The cross-party Education Select Committee Inquiry on SEND (Special Educational Needs and Disability) was published. It states that a generation of disabled children and young people have been let down by the implementation of the Children and Families Act and that EHCPs and the support they are meant to secure has not been provided to disabled children.
- 2021 We are still waiting for the full government response to the SEND Inquiry… Another generation of disabled people have to fight for inclusion.
The events above are all regarded as significant steps on the way to aiming for the equal treatment and inclusion in society of disabled young people. The rest of this resource describes what the generations of disabled young and older people who came together in our project learnt from each other during their workshop discussions.
This resource is now divided into four themes which emerged from our workshop sessions.
- Becoming Aware
- Building Your Leadership Skills
- Building a Culture and Making Change
- Practical steps to bring generations of disabled people together
We have used our shared experiences and our words in this resource. We have included the words and ideas of the activists – some of these were new for us but we think it is important to learn these and to use these in our own fight for our rights.
We started our workshops by asking the leaders:
How did you first become aware that Disabled people could be discriminated against (treated unfairly because they are seen to be ‘different’)?
Many of their memories related to starting school. Some went to mainstream schools and some to special, segregated schools (a school just for disabled pupils). They remembered not being allowed to do the things that other children could do or being told that it was not possible to adapt things just for them.
People in the workshops described how they had been described in negative language such as a ‘walking disaster’ while many spoke about how they gradually came to realise that they were treated as ‘less than’, and as ‘different’. One told us about moving from a special school to a mainstream school and realising that there were suddenly a lot more opportunities available to them.
As RIP:STARS, we also felt that going to school was a defining moment for us too, and often things were really hard. For some of us, the classroom environment just did not work and teachers often did not listen to what might have improved things. We felt lost in the system – a square peg in a round hole, when maybe the hole just needed to change shape a bit.
One of us realised that we needed to go from A to F to get to B, whilst other students seemed to just go straight to B. At this early stage discrimination was often a feeling that did not yet have a name – we just knew we were being treated differently and unfairly. What was being felt was oppression but this is not a familiar term to most young disabled people. It just felt wrong and made us angry and upset, but we did not know what we could do about it.
We wanted to learn how disabled young people can go from being angry and often feeling alone in being discriminated against to feeling that they can change things and make a difference. We were interested to know from the disability leaders:
What or who inspired you to make a difference?
One leader described how they were exposed to the disability rights movement when they became involved in a project for disabled young
researchers similar to the RIPSTARS, finding out that it was possible to make change and meeting inspiring disability activists. Another did not consider themselves disabled at the time of being inspired, but they had learnt about Human Rights and become involved in other rights movements and only later on became a disability activist.
One leader had a mum who was a feminist and was involved in politics through her community work, from an early age this leader was encouraged to think about her own discrimination and also discrimination on a wider perspective. The clear message was that activism in one community overlaps with others. Disablism, racism, sexism, ageism, homophobia are all rights issues.
It doesn’t matter who inspires you, or how you become inspired, just get out there and be part of the fight for rights and for change.
2 Building your leadership skills
We know it is one thing to feel angry and to want to change things but it is not easy to do when you are on your own, or living in the middle of nowhere. So we asked the leaders from the disability movement:
What barriers did you face in becoming a leader/ activist and how did you overcome them?
And very importantly:
What barriers do you think Disabled Young people face in becoming disability rights defenders?
Many of the barriers spoken about were the same barriers that create discrimination against disabled people in society. These included attitudes such as low expectations of what disabled young people can achieve and years of being told, ‘you can’t do something’.
People spoke of the medical model of disability still existing, whereby disabled people are seen just in terms of their impairment, as ‘broken’ and ‘not perfect’ and something to be fixed. This can lead to individual, impairment categorisation and divide disabled people who share oppression and who could fight together.
Some participants at the workshops talked about how we need more collective action but this is a challenge because young people are not
introduced to the social model of disability and do not get taught a political education, they still see disability as an ‘individual deficit’ – as something that is wrong with them, rather than that society needs to change.
When we talked about how young disabled people could join the Disability Rights Movement it was noted that there are a lack of paid opportunities, with few jobs for young people in the disabled people’s movement and no clear route in. Young people needed opportunities to develop the necessary skills and have mentoring opportunities.
Some of the younger leaders spoke about their experiences coming into a rights movement which had been mostly led by ‘white, older men’ and how it was important to also learn about activism of disabled women, disabled women of colour, activism amongst the disabled LGBTQ+ community for example, and recognise multiple, intersecting discrimination.
As RIP:STARS and Young Disabled people we recognised our and others discrimination, but we did not know where to start, and only became involved in activism because of the RIP:STARS project.
We did not know that disabled people-led organisations even existed. We did not know the right language to use, what the culture of an organisation would be, would we be welcome in these spaces? Would we see ourselves fitting into these places? Would we have something to contribute and be listened to? Could we make a difference?
We wanted to see how we could bring the generations together.
3. Building a culture and making a change
We wanted to find out how, together, we could build a culture of change so we asked:
How do you think Disability Leaders and Young people can support each other to develop skills and a culture of activism together?
As disabled young people we want to step into the shoes of the current leaders so we need to know how to take the steps for that to happen. Our conversations with the leaders made us think that to keep the disability rights movement alive and feel real for younger generations maybe a different kind of leadership is now needed, leadership for the times we live in now. Learning from the past but embracing the modern challenges we face.
Leadership that recognises and values the intersectionality of identities and is inclusive to all. We all have multiple identities – our ethnicity, gender, sexuality, class, religion, culture or maybe we do not choose labels at all. We discussed how all disabled people with all identities should be welcomed within the rights movement and collectively fight for rights.
One recent development that can help us to connect with other people globally and create a mechanism of change has been the internet. The internet has revolutionised the possibility for Young Disabled leaders to become ‘influencers’ or ‘game-changers’ with many disabled activists posting and raising awareness of the lives of disabled young people. Through social media, mobilising support and linking with allies, the fight can be a much wider collective action, we can link internationally as well as locally and nationally. As well as raising awareness of oppression and discrimination, we can highlight how society creates barriers, and together we can change attitudes.
To even begin to think about possibilities for leadership we need role models, to see someone who has faced challenges or oppression but is powering through, not showing that they are struggling, looking like they are doing well, that gives a disabled young person a boost, we then think ‘I can do it’. A number of the leaders said how it important it was for them to see disabled people working within a Disabled People-Led Organisations (DPOs).
Sometimes DPO’s involve disabled young people through volunteering or through internships and both of these are important but not the same as seeing a disabled person valued and rewarded in the same way as the rest of the other employees. One of the younger disabled leaders told us that the paid roles were often at management level and not entry level and this needs to change.
Rights were mentioned often so we asked:
What advice would you give Disabled Young people who want to fight for their rights?
We heard the leaders encourage us to have ‘constructive rage’, to feel rightly angry about the injustices that disabled people are subjected to and to use that anger to do something about it. The message was that leaders need to be the change, to be stubborn and to persist in our actions. Most did not just ‘wake up and be a leader’, it took time, growing confidence and small steps.
Disabled leaders told us that activism takes courage and, at times, it can be quite isolating. This is the reason that being in it together is important, so that younger and older disabled people can support each other. Young people can help shape the future by saying this is what we want, this is what our lives should be like, as one of the leaders said:
‘We made change for the people that came after us and you will make change for the people that come after you’.
Knowing that we have an important role to play is inspiring us to take the steps that we can in our own lives and learn from the inter-generational experience.
As one of our RIP:STARS group said:
‘It’s time the older Disabled leaders passed the torch around, it’s time for us to take the reins’.
To end each workshop everyone wrote messages of encouragement, here are a few of them:
- Reach out, connect
- Your experience matters and is valuable
- Embrace your difference, don’t let them define you
- Fall over but get back up
4. Practical steps to bring generations of Disabled people together
These are some of the things we learnt and now want to share with other Disabled Young people:
- Your personal story matters – what you have experienced has shaped who you are.
- Get political, learn about disability activism, learn about current fights being led by disabled people.
- Learn about your rights as a young person and as a disabled person.
- Learn about the social model of disability – it will change your life forever. There are lots of YouTube videos on the social model.
- Get in touch with a disabled person led organisation and find out what they are doing and ask to attend one of their meetings to see what it is about.
- Finally: Don’t let anyone make assumptions about what you can or can’t do.
These are things we think DPOs could do to help build partnerships with Young Disabled people:
- Reach out into schools, colleges and universities (mainstream and special) as we don’t know where to find you. You will find that many young people want to become activists and feel passionate about oppression.
- Allow young people to bring a friend along to one of your meetings and give us trial sessions.
- Show how far Disabled people have come – we do want to learn our history as well as shape the future.
- Share your shared experiences of oppression – we learnt that we share many of the same experiences.
- Be prepared to learn, listen and adapt to empower a young persons’ voice. Please ask us to tell you how things could be done better, we have lots of ideas, creativity and enthusiasm.
- Be prepared to share your power. Nothing about us, without us should include us all.
- Be prepared to consider new ways of inclusion, for example, we may have more social media skills.
- Work in a social model of disability way – identify the barriers that young disabled people might face in joining your organisation, these might be lack of awareness, attitudinal or language barriers.
- Please offer training and support for young people.
Young people can recognise tokenism in an instance, so only involve them if you genuinely are prepared to hear what they have to say, and are prepared to act on it to make change!
This resource is an example of what can be done when generations of Disabled people work together to create change. Together we are stronger. We hope that you have found it useful, inspirational and ask that you please share it far and wide!
Thank you, the RIP:STARS – Eva, Tom, Jordan and Ben, 2021
Making Things Happen Report: Amplifying Young Disabled People’s Voices
Making Things Happen; Young Disabled people; amplifying their voices.
Project summary report, August 2020.
The Making Things Happen project is a 12 month project with a facilitated series of workshops and work experience for Young Disabled People within ALLFIE. The workshops explored how ALLFIE might better engage Young Disabled people in their campaigns work by understanding their current issues and enabling them to work with us to develop initiatives that promote inclusion and that are specifically relevant to Young Disabled people at a grassroots level.
Over August ALLFIE delivered a series of workshops, which presented a range of information covering identity, the social model of disability, understanding barriers and asserting solutions and rights. The purpose of the workshops was to enable Young people to share experiences while providing some key information about inclusion and rights relating to disability.
Due to the Covid-19 pandemic the workshops had to be delivered over Zoom. The five workshops were held during August 2020 and were attended by 8 participants. The project was funded by #iWill. ALLFIE recognised that holding a meeting remotely had advantages and disadvantages in terms of accessibility and digital exclusion.
All workshops were co-designed and co-facilitated with Young people. Young people led on the feedback of the all sessions and the production of this report. This report presents the key themes emerging from the discussions, lessons learnt, a summary of each workshop and some suggested future work initiatives.
ALLFIE Survey Report: Coronavirus Impact on Disabled People’s Education
Read the findings of ALLFIE’s Inclusive Education Survey on the impact of Coronavirus (Covid-19) on education for Disabled pupils and students during lockdown.
In April 2020 the Alliance for Inclusive Education surveyed Disabled students, their parents and education practitioners, to discover emerging effects of the Covid-19 pandemic following the closure of educational institutions.
This report explains our survey findings and covers:
- Survey findings
Who is ALLFIE?
The Alliance for Inclusive Education (ALLFIE) is the only national organisation led by disabled people working on educational issues and, in particular, working to promote the rights of disabled students (including those with SEND) to be included in mainstream education, as set out in Article 24 of the UN’s Convention on the Rights of Persons with Disabilities (UNCRPD).
ALLFIE uses the term ‘disabled children and young people’ because many will fall under the definition of disabled persons in the Equality Act 2010.[i]
Why has ALLFIE undertaken this research?
ALLFIE wanted to know how disabled students’ education has been affected as a result of the Covid-19 pandemic after the closure of educational institutions. Whilst statutory education-related services are facing an unprecedented time, we wanted to find out whether decision makers and staff are working within the spirit of the law to ensure that, as far as possible, disabled students’ rights to mainstream education are upheld during lockdown.
ALLFIE’s survey encompassed three individual surveys: one for disabled students, one for parents and one for education practitioners. We wanted to identify:
- To what extent that schools expected parents to home school their disabled children.
- What support parents received in supporting their disabled children access mainstream education.
- The accessibility and inclusivity of the online platforms.
- Alternative provision for children unable to participate in online learning.
- Disabled students’ experiences of remote education, alternative curriculum and support during closures of universities.
Coronavirus Act 2020
- The Secretary of State for Education can issue a notice permitting local authorities to use their reasonable endeavours to secure the education, health and care (EHC) provision as set out in the child or young person’s Education, Health and Care Plan (EHCP).
- Local authorities are permitted to complete the child or young person’s EHC assessment and plan process in any timescales required in the regulations set by the Secretary of State for Education.
For many disabled students (over the age of 18), there have been temporary modifications to the Care Act 2014[iv] around securing care provision that might be needed to access mainstream education.
- The Care Act 2014 allowed local authorities to only provide community care at a level that does not severely interfere with the basic human rights of those needing that care.
Equality Act 2010 duties
The Equality Act 2010 duties remain in place without temporary modifications by the Coronavirus Act 2020. As such, education institutions are still under public sector equality, general anticipatory and individual duties to make reasonable adjustments for disabled students. Furthermore, schools are also required to publish an accessibility plan covering increasing accessibility of the curriculum and information for disabled students.
Remote education and specific legislation
The Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations 2018[v] requires uploaded content on the websites and mobile applications of publicly funded education institutions to comply with European accessibility standards such as Web Content Accessibility Guidelines (WCAG) 2.1 between September 2020 and June 2021. Education institutions ought to be well on their way to having accessible online learning platforms and as such the Coronavirus Act 2020 would have no impact because the Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations 2018 remain in place.
UNCRPD Article 24
The Coronavirus Act 2020 does not allow the Government to put aside disabled students’ human rights under their international treaty obligations. The Government is under a positive duty to develop a fully inclusive education system that welcomes all regardless of impairment, health condition or ability under UNCRPD Article 24 and Comment 4.[vi] The UNCRPD Monitoring Committee has published Covid-19 and the Rights of Persons with Disabilities Guidance[vii] with a specific emphasis on remote education.
Disabled pupils and families denied access to mainstream education
Disabled pupils and their families have been particularly adversely affected by the lack of education provision during the closure of schools.
- 83% of parents are expected to home school their disabled children.
- 54% of parents have not received any support from either the local authority or school to help with home schooling.
- 34% of parents have received some (but not a sufficient level of) support to help with home schooling.
ALLFIE has surveyed its members and invited Facebook posts to enlist disabled pupils, university students, parents and educational professionals’ experiences of the provision of education services throughout the Covid-19 pandemic. Survey respondents identified online learning and assistive technology, accessibility of virtual platforms, in-person support and coursework assessment arrangements as being major barriers that disabled students experienced in participating in mainstream education during lockdown.
Online devices and assistive technology
During lockdown, our survey revealed to what extent disabled students have access to the technology and internet access required to complete school, college and university work. Whilst some parents reported that they had the necessary online devices and internet connection to enable their disabled children to engage in remote education, we were informed this is not the case for all, especially for those with a lower socioeconomic status, as this specialist teacher observes:
“Many of [our] learners are without the equipment needed to access Microsoft Teams which is where [the] school is currently setting work. We’ve got 400 laptops in the ICT suite sitting [there] idle. Let’s give them to the children. Let’s give them whatever they need so they can access learning.” (Specialist Teacher ALLFIE Professional Survey April 2020)
Many disabled students are only able to use computer facilities involving expensive assistive technology and hardware provided on-site by the education institutions, as reported by Disabled Students UK:
“A large proportion of disabled students report to us that they have not been given the same tools, software or adapted furniture which they had used and relied on at university…”
The ownership and expense involved in having the same ICT set up at home and on-site has become a real barrier for both disabled students’ ability to learn and complete coursework after the closure of many education institution facilities, including access to computer rooms and labs.
Accessibility of virtual platforms including curriculum
We found that most schools are using virtual remote education platforms so that students can continue with their course learning and work during lockdown. A few disabled students and parents told us of education institutions that have been working tirelessly to make the remote learning experience as inclusive as possible.
“We have a means of video contact with Communication Support staff for planned contact time using BSL [British Sign Language]. Work is set online and accessed daily via an app…Fortunately we have not had any problem so far as my child has good literacy skills and I am also a fluent BSL signer so can explain things if required. School have been good; work set has been realistic and there is [a] means of contacting subject teachers and specialist staff if needed.”
However, for the overwhelming majority of families and disabled students their experience of remote education has been one of exclusion. Some parents have generally commented that the “online learning materials are for neurotypical children only” or “online activities are for other rather than their own disabled children”. These parents share similar views of those articulated by disabled students’ experiences of remote education:
“[There are] Virtual Learning Environments (Blackboard) but the content isn’t accessible 90% of the time. Curriculum content and learning platforms haven’t been changed except more material added – the average accessibility of that online content has actually decreased as speed/readily available content has been prioritised above access.” (ALLFIE Disabled Student May 2020)
Some respondents provided us with examples of their uploaded curriculum. Study materials and lessons are inaccessible for disabled students:
“Many of the core readings for my modules are unavailable online, which adds even more worry to this particularly difficult time. I fear that the university will fail to understand why the quality of my assignments will not be equal to that of my previous work. Circumstances have changed drastically, however, the university does not seem to have grasped this.” (Disabled Student Survey, April 2020)
“The challenge for us is accessing online resources, lots of content isn’t captioned and there is very little in BSL. Tried using BBC Bitesize today and had [the] same problem with clips not being captioned which is frustrating.” (ALLFIE Parents Survey, April 2020)
Aside from the accessibility of online materials, parents have reported that the course curriculum and schoolwork is not inclusive of disabled pupils, as articulated by this parent:
“Every two or three days, a teaching assistant sends us five or six maths worksheets and her art teacher sets work for the whole art class but not [work that is] differentiated for my daughter. Pretty much, that is all that’s being sent..” (Parent Survey, April 2020)
Parents have said that the Oak Academy online lessons and content does not include accessibility features such as BSL interpretation.
Rather than differentiation, schools with remote education facilities have decided to create a segregated curriculum, targeted at disabled pupils with profound learning difficulties.
“The Oak Academy has developed a segregated curriculum for disabled children with profound learning difficulties which [is] not a good example of inclusive remote education. This is not a solution for many disabled children who have benefited from the differentiation of the mainstream curriculum. Parents have told us that they have to source the curriculum themselves without assistance from their school’s teachers and SENCOs.”[viii]
Parents’ experience of remote education is that it will not work for all disabled students because they prefer to learn in a more tactile manner. Whilst most education institutions provide no alternatives, a couple of parents reported how schools are helping to set appropriate school work for their disabled pupils. For example, this parent explains:
“Learning grid with some ideas for simpler learning tasks at home, some actual sums and spelling especially for him. Simpler learning tasks and sent home materials such as cubes, number board and reading books [the] day before lockdown. Not doing online learning, [his] teacher thinks of tasks for me to do with him at home and I submit them through Microsoft Teams.” (ALLFIE Parent Survey May 2020)
Disabled students reported that Higher Education institutions have not undertaken an Equality Act’s Public Sector Equality Duty equality impact assessment around the impact of remote education upon disabled students’ ability to complete their courses. Disabled students reported that higher education online learning platforms have been designed with non-disabled learners in mind, with little consideration paid to the accessibility of the curriculum, study materials and lessons. Similar sentiments have been made by parents who are reliant on individual schools to decide for themselves if and how remote education will be delivered for their pupils within the spirit of Government legislation and policy.
“Parents are at the mercy of individual interpretation of Department for Education advice by headteachers. Some local authorities are more equipped to support schools than others due to austerity cuts. This leads to variable provision.”
Whilst some schools are delivering inclusive remote education, this is not the case for all. Despite the Public Sector Website Accessibility regulations being in place, universities are still failing to make their virtual platforms accessible for disabled students. We have found that virtual platform providers may not be complying with making their online learning opportunities inclusive of all. Whilst virtual platform providers cannot take full responsibility for differentiating the curriculum without prior knowledge of individual students, education institutions have nevertheless failed in their duty to complete this work as required under the Equality Act’s reasonable adjustment duties.
The Government permitted NHS England (NHSE) staff to be deployed from their NHSE day-to-day jobs to administrative and health care assistance roles needed to staff the Covid-19 wards. To facilitate this, the Government modified the Children and Families Act s(42) so that local authorities are required to use their reasonable endeavours to secure the SEND provision. The Department for Education are aware that the social distancing guidance could leave disabled students without any support at home during the closures of schools. Consequently, the Department for Education published guidance providing education providers with an extensive list of ideas on how SEND provision can still be arranged remotely for many disabled students.
Research respondents have reported concern over the support that disabled students received during lockdown. Education professionals are aware that families will be at home without any guidance as to how to support their children with their education.
“I am very concerned about young people and families not being supported in relation to [their] emotional, social, and cognitive development.” (ALLFIE Professional Survey May 2020)
“Braille materials [have been] provided for key subjects for [my] eldest child, although this may be withdrawn due to staff redeployment. Currently had no contact regarding [my] youngest child.” (ALLFIE Parent Survey May 2020)
Parents are telling us that they are not in receipt of therapy because therapists have been deployed from working with disabled children in schools to working in support roles on NHSE Covid-19 wards.
Whilst virtual therapy works for some disabled students, this may not be the case for all of them. Education practitioners, parents and disabled students highlight the importance of the continuation of in-person assistance during the Covid-19 pandemic.
“I think the Department for Education comment that education practitioners can be delivering therapy online is far removed from the reality of what we are being asked to do and it is not helpful. We should be ‘out there’ virtually helping parents and schools manage the situation.”
“Non-Medical Help support has become non-existent, with very little left being distanced [including] ‘Skype’ like calls and support which does not really work.” (ALLFIE Disabled Student Survey, April 2020)
“I have to sit with him the whole time he is learning to keep him on task, rather than Google Classroom some kind of FaceTime with an learning support assistant or teacher would help, we need proper support to teach new concepts.” (ALLFIE Professional Survey May 2020)
For various disabled students, there is no replacement for the quality of in-person support provided on-site. Some disabled students learn better face-to-face where the practitioners are providing assistance on-site either within the school or home environment.
“Very much responding to our needs and capacity. Online eye gaze via Zoom and Skype from Speech and Language Therapist Same for physiotherapy [and] mental health support via Zoom, i.e. we meet up with the rest of the class.” (ALLFIE Parent Survey May 2020)
“Online support and contact newsletters, with additional resources and ideas. Much more practical ideas for learning, and Occupational Therapist, Speech and Language Therapist ideas etc. Mental health [and] well-being has been at the forefront of the thinking of our school.” (ALLFIE Parent Survey May 2020)
Strong emotional support comes from the development of personal relationships between practitioners and families or disabled students. Negative impact of social isolation during lockdown has taken its toll on disabled students, as highlighted by these parents:
“Students are finding it difficult at home, lack of motivation, [not] understanding the work being set and not being with their friends. Seeing high levels of anxiety and there [has] been a rise in some of our very vulnerable students self-harming.” (ALLFIE Parents Survey May 2020)
“Being isolated in lockdown during the final months of a university degree is difficult for most but [for] those with disabilities, in particular [those] on the autism spectrum, this has been a massive barrier to learning and has severely affected their mental health.” (ALLFIE Disabled Students Survey 2020)
Education aside, education professionals and families have expressed concern over the social isolation their disabled children are experiencing without school intervention. Schools have failed to set up WhatsApp groups as a way of reducing the social isolation experienced by disabled pupils, particularly if they are not in any school friendship groups.
Education practitioners and parents have expressed concern over the lack of appropriate schoolwork, SEND provision and school routine for prolonged periods of time and its impact upon disabled pupils. Education practitioners have warned that five months without formal education will have a profound impact upon the education progression and attainment gap between non-disabled and disabled pupils and their life chances. Indeed, practitioners have warned:
“I am Speech, Communication and Language Therapist -based within a mainstream junior school. My pupils are not in school and some are struggling to access online learning opportunities. [I am] concerned that [the] existing gap will widen further and that pupils will need an extended period of readjustment on [their] return to school.” (ALLFIE Education Professional Survey April 2020)
Despite local authorities being required to use their reasonable endeavours to secure SEND provision, we have found that the majority of disabled children are at home without any assistance that would enable engagement in remote education and completing schoolwork.
Local authority assistance
Local authorities are still under a duty to arrange both SEND provision and educational placement for all young people up to the age of 25 completing courses up to A Level (Level 3) course standards. Apart from social care provision, local authorities have no duty to provide educational provision for young disabled people completing higher education courses.
Schools that remained open during lockdown have been expected to prioritise providing education for disabled children with EHCPs alongside the children of key workers. During this period of time, many parents accepted that their disabled children will be educated at home.
“The focus needs to be on keeping children and young people safe, but far more could be done to support families. Systems, including in my own service, have been too reliant on families’ [schooling]. There needs to be much more holistic support for families with better communication across agencies. Services need to fit families flexibly rather than the other way round. This is particularly so for support for social, emotional and mental health – fixed pathways and venues are not what is needed.”
There are parents who felt that sending their disabled children to school would be too risky.
“Local authorities should have [provided] full support during [lockdown] and not force us to send my child to school while my husband and I are in the at risk category.” (ALLFIE Parents Survey May 2020)
Similarly, some parents decided it was in the best interests of their disabled child to attend school.
“I have fought for her to go back to school and can only send her in two half days because they say the teaching assistants have to have five days in between working with her. The other kids are in school every day though.” (ALLFIE Parents Survey May 2020)
Families reported that, in general, there has been either none or insufficient engagement between themselves and the local authority’s SEND department, who have a responsibility to arrange therapy, mental health and social care services and the provision of specialist equipment such as play equipment. From many families’ perspectives, it appears that local authorities have interpreted the “reasonable endeavours” to mean no endeavours to secure the SEND provision for disabled pupils with EHCPs.
“Plans have been modified to ensure reasonable endeavours are legally shown but the reality is if they’re not in school [then] we’re relying on parents delivering mostly, not a lot.” (ALLFIE Practitioner Survey 2020)
“The local authority is appalling. Social care support and the behaviour of the leadership of the SEND department is an utter disgrace. A national scandal.” (ALLFIE Parents Survey 2020)
Except for a few, families experiences have been that the local authorities are not working in the spirit of the Children and Families Act modified s(42) duties.
Whilst a few disabled students have been well-supported in continuing with their mainstream education at home, this has not been the case for the overwhelming majority. There has been little-to-no forward planning of the continuation of disabled children’s education at home. The Children and Families Act’s easements and school closures have meant that the majority of disabled children and young people have been without SEND, Health and Social Care provision and a curriculum for over five months.
Moreover, the majority of schools have not provided any differentiated online or alternative off-line curriculum for disabled pupils, despite NHSE and school staff remaining on the payroll. This is not helped by school online platform providers failing to consider the incorporation of accessibility features into their virtual lessons and uploaded curriculum.
Disabled university students’ experiences are similar to those of disabled school students; they have reported being unable to continue with their courses online because of the inaccessibility of the curriculum and alternative provision to remote education. Whilst the non-availability of non-medical support and assistance is not such an issue, disabled students have expressed their preference of support provided on site rather than remotely.
Similarly to schools, higher education disabled students’ services have not been available for disabled students. Whilst families and disabled students and practitioners know that providing education provision for disabled students during lockdown will be challenging, what has surprised us is the thorough lack of any education being arranged for disabled students, leaving them with no or very limited access to mainstream education despite the Department for Education’s Covid-19 SEND guidance and the Equality Act 2010 still being in place.
The Coronavirus Act 2020 and subsequent education and social distancing guidance have not only provided insufficient protection against disabled students being denied mainstream education, but we also believe that the Government are in breach of their UNCRPD Article 24 obligations in arranging inclusive education provision even during lockdown.
“It is without [a] doubt a travesty of our time that non-disabled people are struggling to make adjustments to [their] everyday life due to Covid-19. And yet for far too long disabled people have been denied equal rights to mainstream education. No other group has been systematically excluded from mainstream education because of their personal characteristics, i.e., their impairment.” (ALLFIE Practitioner Survey 2020)
[i] Equality Act. (2010). Retrieved from https://www.legislation.gov.uk/ukpga/2010/15/contents
[ii] Coronavirus Act. (2020). Retrieved from https://www.legislation.gov.uk/ukpga/2020/7/contents/enacted
[iii] Children and Families Act. (2014). Retrieved from https://www.legislation.gov.uk/ukpga/2014/6/contents/enacted
[iv] Care Act. (2014). Retrieved from https://www.legislation.gov.uk/ukpga/2014/23/contents/enacted
[v] The Public Sector Bodies (Websites and Mobile Applications) Accessibility Regulations. (2018). Retrieved from https://www.legislation.gov.uk/uksi/2018/852/contents/made
[vi] Convention on the Rights of Persons with Disabilities. (2008). Retrieved from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-24-education.html
[vii] United Nations. (2020). Covid-19 and the Rights of Persons with Disabilities: Guidance. Retrieved from https://www.ohchr.org/Documents/Issues/Disability/Covid-19_and_The_Rights_of_Persons_with_Disabilities.pdf
[viii] Special Needs Jungle. (2020, May 4). What’s wrong with Oak Academy’s specialist curriculum? Retrieved from https://www.specialneedsjungle.com/whats-wrong-oak-academy-specialist-curriculum/
Accessibility Plans as Effective Tools for Inclusion in Schools: Are They Working?
ALLFIE’s ground-breaking research project report, authored by Dr Armineh Soorenian and funded by Disability Research on Independent Living and Learning (DRILL).
This project draws on focus groups, surveys and interviews with Disabled secondary school pupils and their parents and with education professionals across England. It was overseen by the Alliance for Inclusive Education (ALLFIE).
The law, Accessibility Plans and Disability in schools
Since 2002 all schools have been required by law to publish and implement Accessibility Plans. These plans are meant to set out how, over time, schools will improve:
- the supply of information to parents of Disabled children and young people
- physical access
- teaching and assessment to meet individual need.
By failing to publicise and implementing their Accessibility Plans, schools might be breaching the Special Educational Needs and Disability Act (SENDA) 2001 and the Equality Act 2010 – as well as breaching our international legal obligations.
Under the Equality Act and the 2015 Code of Practice for the Act, schools must not directly or indirectly discriminate against, harass or bully Disabled children and young people. They must make reasonable adjustments – including in teaching and assessment to ensure that Disabled pupils are not at a substantial disadvantage compared with their peers.
Our surveys and focus groups suggest many schools fail to meet these requirements.
Parents participating in the project were confused about their legal rights and wanted to know more about how they could challenge unlawful disabling practices.
- Unlawful and disabling practices must be challenged, primarily by councils. Parents and Disabled young people need a statutory route to challenge schools in the courts.
The UN Convention on the Rights of Persons with Disabilities (UNCRPD)
The UK government signed the UNCRPD in 2009. Article 24 guarantees all Disabled pupils and students a right to participate in all forms of mainstream education. However, the UK placed ‘reservations’ on this when it signed the convention. The UK remains out of step internationally on equal access to education.
Disabled pupils’ individual requirements and needs are often not considered and they are unable to reach their full potential, which again breaches Article 24.
The Disabled young participants are frequently discriminated against due to their impairments – in contravention of Article 5 of the Convention – and had no equal and effective legal protection against discrimination. Limited access to information and poor physical access contravenes Article 9 of the convention.
Disabled pupils are also not able to fully enjoy all human rights and freedoms on an equal basis to other children. They are often denied opportunities to learn and play with their friends which amounts to segregation – contravening Article 7.
Accessibility Plans – a well-hidden secret
Some 17 years after the requirement to produce Accessibility Plans was introduced, schools are failing in their legal duty. Most Disabled young people are facing more barriers than ever.
This has a shocking impact on disabled children and their families.
Disabled young people and their parents are given little or no information – even around the existence of Accessibility Plans. Often parents take 30-40 minutes to find the plans on the school website – with many only looking after we told them they existed. It is therefore unsurprising that few have been involved in their production, development or review. Just 7% of parents had been invited to participate in developing the plans for their child’s school.
None of the parents we spoke to knew anyone who had used an Accessibility Plan to appeal against disabling practices. Many parents did not even know that schools are legally required to provide lifts, ramps or other reasonable adjustments.
Accessibility Plans – fine words but the reality is often very different
Those parents who found their school’s plan felt it was a tick-box exercise. Their promises around access and support are unfulfilled and the fine words are meaningless in practice. Parents agreed that the culture and ethos of a school would determine if the plans were embedded in everyday school life and decisions.
Disabled young people and their parents across England told us they feel let down by their schools and the negative attitudes and lack of understanding from staff the encountered.
One parent suggested schools can use Accessibility Plans to avoid putting reasonable adjustments in place: “The plan can say, ‘We’re not going to do anything’.”
Parents’ scepticism was reinforced by one professional, who told us: “Generally there are quite a few schools that have the documents, but only a limited number of schools embed (them) into practice, and therefore there are very few schools where it actually functions.”
Only 20% of parents in the online survey felt the plans had improved the opportunity for their child to take part in activities, while 23% felt they had improved access. Amongst professionals the figures were 48% and 51% respectively.
Accessibility Plans are supposed to improve the delivery of written information but Disabled pupils generally felt provision in this area is poor. The professional participants recognised that their schools tended to only respond to requests rather than provide information in alternative formats as standard practice. Rather than seeing this as a shortcoming on their part or that of their schools, they blamed funding or low uptake by pupils.
ALLFIE is calling for comprehensive national guidelines to support schools in producing robust Accessibility Plans. They are looking to work with young Disabled people to produce an Accessibility Plans Toolkit for schools. We need more research on the quality of Accessibility Plans and how they are implemented.
Disabled young participants and parents suggested that teachers, headteachers and senior managers should receive regular impairment-specific disability and inclusion training.
Local authorities, Ofsted and the Department for Education are failing to hold schools to account for the quality, visibility and implementation of their Accessibility Plans – which are a legal requirement. Many schools are failing in their duties and new legislation is needed. Almost two-thirds of the 127 LAs who responded to our Freedom of Information Act request did not even know if their schools had Accessibility Plans in place.
- The Department for Education needs to monitor, promote and enforce the positive and continuous development and implementation of Accessibility Plans.
- Schools and councils need to fully involve parents, Disabled children and professionals in the production, development and review of Accessibility Plans.
- OFSTED should have a legal duty to routinely monitor the impact and implementation of Accessibility Plans, and to include their findings in school inspection reports.
- Accessibility plans should include compulsory training packages for teachers, headteachers and senior management teams, with regular mandatory updates.
In choosing a school for their Disabled child, parents want the same choices and opportunities as other parents – with the clear opportunity to choose a mainstream school. To do so, they need transparent information and reliable support from schools and local authorities – which all too often they are denied.
Instead they face prejudicial and negative attitudes from staff during the admissions process. This prevents many Disabled children and young people from attending their preferred school.
A school rated outstanding by Ofsted told one mother that they ‘just couldn’t take’ her son.
Yet professionals involved in our focus groups and surveys did not recognise these barriers, believing their school’s admission process was no different for Disabled pupils.
We found parents are sometimes forced to choose a special school or home schooling due to fears about inadequate support levels for their child’s educational and other needs. This separation from friends led to mental health problems for some children.
Despite legal protection, the percentage of SEND pupils in mainstream schools has fallen by 24% since 2012 while the number in special schools has risen by nearly a third.
However, instead of funding inclusive and improved provision in mainstream education, the Government is planning costly new special schools.
Accessibility Plans must focus not only on the removal of physical barriers in schools, but on challenging attitudinal, physical, systemic, and other obstacles within the admissions process so Disabled learners can attend their preferred school.
Parents of Disabled young people were generally critical of schools’ physical structures and barriers to access, enjoyment and participation. These include noise and lighting as well as physical obstacles. Children with neurological conditions or autism could be affected by the fluorescent lighting or large groups of children moving around the school at regular intervals.
Disabled children and young people and parents complained about heavy doors, steps and the absence of ramps and lifts/broken lifts. Parents said many accessibility problems arose from the small size of classrooms. Sometimes wheelchair users sit in a corner or by the door where they cannot interact with other children or participate properly in the class.
In schools without lifts disabled children of all ages would be in one classroom with their lessons handed to them on paper. One parent observed: ‘It’s not even teaching. It was just literally giving them paper and saying, “This is your lesson. This is what you’re expected to do today,” and that was it. I don’t even think it was a qualified teacher in there. I honestly think it was a TA. It’s shocking, absolutely shocking.”
Asked in our survey if they thought their child’s school was accessible, 42% of parents of Disabled children and young people said yes, 27% no and 31% said ‘sometimes’. Staff showed bias and inflexibility when asked by parents to address barriers. Clearly, legal duties are often not being met.
Teaching, Learning and Assessment
Teaching/learning methods and assessment procedures should be inclusive and flexible.
Parents often encountered insensitive and discriminatory responses to requests for reasonable adjustments in teaching and assessment to meet their children’s impairment-related needs. Some worried that the various pressures and discrimination around access and learning could ‘break’ their children socially – and possibly emotionally.
Disabled young participants feel the playing field is not level in terms of their ability to participate in classroom activities and the school curriculum – particularly in assessment.
Programmes should be put in place to adequately support Disabled young people, ensuring a consistent and rights-based approach to education. Teaching and assessment procedures must be responsive to – and support – each child’s needs.
British Sign Language should be taught as a modern language while the English curriculum should include emotionally accessible content.
Some rents are told their child is ‘difficult’ and the school refuses to teach them fulltime. Some children only attend school 2-3 days per week under a ‘part-time contract.’ Disabled children make up around 45% of all exclusions. One parent spoke of his child being described by the school as ‘ineducable’ but after home schooling he is doing a chemistry GCSE a year early.
The education professionals who participated in our focus group or survey felt that an effective Accessibility Plan would help schools prepare classroom support for individual students, whether through new use of resources or by adjusting teaching methods. They felt that Disabled pupils would then be able to access their lessons and improve outcomes.
- Teaching staff must structure their teaching around a commitment to maximising all students’ learning experiences by using methods such as multi-level instruction, co-operative learning, individualised learning modules, activity-based learning and peer tutoring.
The Disabled young participants feel many barriers prevent them fully participating in their school community. These include prejudice, poor transport facilities, few trained staff during social time, and inaccessible school activities. This led many to feel isolated – which affects their confidence and self-esteem.
Some of the children report spending break and lunch by themselves to avoid bullying. Others don’t go on school trips – particularly longer ones – for resource or support reasons.
Social inclusion in schools should be a key part of any Accessibility Plan – not an add-on.
Although Accessibility Plans are not required to address social inclusion, it is clear that schools should be required to work towards full social inclusion and participation.
- For schools to create more opportunities for Disabled pupils to socialise with Disabled and non-disabled children in fully accessible settings, including accessible playgrounds and outdoor activities. Accessibility Plans should include anti-bullying strategies.
Inclusion Now 54 Autumn 2019
Intersectionality, UN Sustainable Development Goals, Disability History Month and more.
Inclusion Now magazine | published by disabled people, for disabled people
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Welcome to the 54th edition of Inclusion Now. Audio and text versions are below or you can read it in magazine format on Issuu
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ALLFIE campaigns for children and young people to be supported to manage disability within the UK education system.
Back Up’s inclusion toolkit
The Back Up Trust have produced an education toolkit aimed at young people with spinal cord injuries, their parents, teachers and health care professionals. Much of it is applicable to young people with other impairments.
Current Debates: Part 2
Exploring support provision for disabled learners and the importance of international human rights in addressing barriers to inclusive education. Academic and ALLFIE trustee Dr Miro Griffiths MBE continues his three part series for education students on some of the key issues around inclusive education.
Inclusive education is a complex issue, with considerable resistance emerging from political, economic, cultural, and social structures in society. There is substantial support for inclusive education with activists, scholars, policymakers, and public officials showing their commitment to developing, promoting, and implementing inclusive education practices. It is not possible to capture the entirety of the debate; however, the aim here is to provide an overview of some of the central points. Please use this as an introduction, which, when combined with the list of suggested readings, provides you with substantial literature and points of reference to develop your own thinking.
Support Provision for Disabled Learners
Support for disabled learners must be contextualised within the existing neoliberal agendas that plague the education system. Currently, education systems prioritise economic viability (Hazelkorn 2015), and competition is rife between learners as they attempt to achieve the highest grades (Verhaeghe 2014). This is deeply problematic for disabled people, as their inclusion within the education system (and the extent to which support is provided) is determined by how valuable the disabled learner is to the existing social structures within society. As Ball (2013, p.48) argues, “the school became in many respects an expression of humanity and a demarcation of the limits of humanity – who was and was not educable, of value, worth investing in”.
Slee (2019) provides a comprehensive analysis of how attempts to develop inclusive education are often undermined by an era that prioritises the exclusion of disabled learners. Support that should be available for learners is denied because educational institutions construct a system that holds the individual responsible for their participation within the classroom environment. To get support, the learner has to accept diagnostic tests and professional intervention (Harwood and Allan 2016). Support is provided on the basis that the student is unable to conform to the expectations of the existing education system, and that the purpose of support is to address the “additional” (otherwise understood as physical and cognitive) needs of the individual. This is significant because support is, thus, framed as a response to the student’s failure to conform to the existing practices of the educational institution. The provision of support becomes rooted in individual competency, rather than acknowledging that support forms part of a wider assessment to reorganise education and take account of the diversity within human existence and participation.
The extensive barriers encountered by disabled learners are well documented (Kendall 2016). It is argued that this will be further impacted by the onslaught of continued cuts to (local) government services, including education services (O’Hara 2014). In the assessment of barriers to accessing education, thought should be given to the mechanisms for examining and determining support levels for disabled learners. Literature highlights how the assessment procedures focus on performing specific tasks and an examination of medical conditions (Fuller, Bradley and Healey 2004). Again, this emphasises how the individual’s access to support is to participate in an education system that is designed by non-disabled people, for non-disabled learners. Nussbaum (2006, p.98) articulated it best, “[disabled people] remain an afterthought, after the basic institutions of society are already designed”.
Importance of International Human Rights
Disabled people’s rights to education are well documented under international law (read the United Nations Convention on the Rights of Persons with Disabilities, in particular: Article 24). The United Nations Committee on the Rights of Persons with Disabilities has produced policy documentation for States to implement that would realise inclusive education (United Nations 2016). However, it is not uncommon for States to sign – possibly ratify – the convention but fail to deliver an inclusive education system. This draws attention to the disparity between what is articulated in human rights treaties and declarations, and what is implemented through policy-making. De Beco (2018) argues that it is possible to transition the ideas of inclusive education into practice but to do so requires a critique of political philosophy and the effect this has on key debates emanating from disability studies literature on inclusive education.
Whilst literature on inclusive education, and the sociology of disability more widely, is typically dominated by majority world scholars, literature from the global South draws attention to the persistent ambivalence towards developing inclusive education systems. Ngwena (2017), through his empirical research, illustrates a double discourse surrounding inclusive education. On the one hand, governments will attempt to show domestic commitment towards implementing the inclusive education approach, often through political rhetoric. This, however, leads to no real change because extensive policy practice continues with an exclusionary approach to disabled people accessing education.
Tools have been developed to understand how states are developing policy to realise the obligations outlined in international human rights frameworks. Priestley and Lawson (2015) introduced an online tool to map and analyse existing disability policies across Europe. This provides opportunities to critique and evaluate the progress made to design, develop, and implement inclusive practices throughout different areas of social policy – including education.
For inclusive education to become a reality, there is a need to consider how international human rights frameworks provide a conceptual basis to instigate a change in policy direction. A direction that moves away from exclusionary and isolating practices, and one that positions education as a matter of social justice. Disabled people, most notably children and young people, must be regarded as active voices in the policy-making process and should form part of the networks that influence the delivery and evaluation of education policy. Analysis of human rights legislation to realise inclusive education should not be at the expense of scrutinising social policy.
This completes Part Two of a three-part series on unpacking the current debates within inclusive education. Part Three will explore key arguments surrounding the purpose of education and the ways in which existing, exclusionary education systems can be resisted.
Ball, S. J. (2013) Foucault, Power, and Education. New York: Routledge.
de Beco, G. (2018) The right to inclusive education: why is there so much opposition to its implementation?. International Journal of Law in Context. 14(3), 396-415.
Fuller, M., Bradley, A. and Healey, M. (2004) “Incorporating Disabled Students within an Inclusive Higher Education Environment.” Disability and Society. 19(5), 455-468.
Harwood, V. and Allan, J. (2014) Psychopathology at School: Theorizing Mental Disorders in Education. Abingdon: Routledge.
Hazelkorn, E. (2015) Rankings and the Reshaping of Higher Education: The Battle for World-class Excellence. Basingstoke: Palgrave MacMillan.
Kendall, L. (2016) “Higher Education and Disability: Exploring Student Experiences.” Cogent Education. 3(1), 1-12.
Ngwena, C. G. (2013) Human Right to Inclusive Education: Exploring a Double Discourse of Inclusive Education Using South Africa as a Case Study. Netherlands Quarterly of Human Rights. 31(4), 473-504.
Nussbaum, M. C. (2006) Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge: Harvard University Press.
O’Hara, M. (2014) Austerity bites: a journey to the sharp end of cuts in the UK. Bristol: Policy Press.
Priestley, M. and Lawson, A. (2015) Mapping disability policies in Europe: Introducing the disability online tool of the commission (DOTCOM). ALTER – European Journal of Disability Research. 9(1), 75-78.
Slee, R. (2019) Belonging in an age of exclusion. International Journal of inclusive Education. 23(9), 909-922.
United Nations. (2016) General Comment No 4 – Article 24: Right to inclusive education. Geneva: United Nations.
Verhaeghe, P (2014) What About Me? The Struggle for Identity in a Market-Based Society. Translated by J. Headley-Prôle. London: Scribe.
Making inclusion “normal”
Our ex-Director Tara Flood visited Finland and Canada to research their experiences around inclusive education. Here is her report.
In 2018 ALLFIE’s then Director Tara Flood received a grant from the Winston Churchill Memorial Trust to research inclusive education by visiting schools and government officials in Finland and Canada.