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“A society where everyone matters”

Wednesday, October 11th, 2017

by Jess Cahill & Yewande Akintelu-Omoniyi

This article is from the Summer 2017 edition of Inclusion Now. Join ALLFIE to receive three issues of Inclusion Now per year.

ALLFIE recently met Dame Christine Lenehan, Director of the Council for Disabled Children (CDC), which represents the national disabled children’s sector. We thought it would be an interesting time to talk to her as she has been working for the government on a review of residential special schools. Her report is due out in early winter.

We asked Christine how the review came about. She explained her own motivation:

“My first job as a professional was working on long stay hospital wards in the 70s and 80s. So that really left an imprint on me. In honesty I’d been trying to look at residential schools for quite a long time, and that’s partly because if children are a long way from home I want to know they’re there for the right reasons and in the right place and getting the right outcomes.”

As well as some political background, she explained that the review was partly triggered by her previous report this year on children in mental health inpatient services.

There are 324 residential special schools and colleges across the UK (“We can now tell you this, we couldn’t before we started.”). For the current review they visited 10% of these across the Ofsted spectrum, from “outstanding” to “requires improvement”, and talked to young people wherever they visited. They spoke to local authorities and looked at why some were placing a lot more children out of the area than others. And they put out a call for evidence, receiving around 130 responses from parents and other people, including from us at ALLFIE. At the time we met, they were digesting what they had found.

Christine talked about her impressions: “I think the strongest thing that comes out of it is that this is not a planned and coordinated system. I think the worst thing for the children and young people is that they repeatedly fail and that they internalise that failure. When you ask the kids “why are you here then?” they say “because I got thrown out of this school and I got thrown out of that school and I couldn’t live at home and I couldn’t do this and I couldn’t do that” and they see that as belonging to them. What they don’t see is this is a system that failed you, they see themselves as being failures of a system.”

“The phrase we use at ALLFIE is that children are being set up to fail,” we commented.

“Yes and I think that’s true. I think we saw a lot of that. The strongest thing that came out of that for me was just how powerful bullying is. We know that bullying is a really powerful dynamic but actually it was SO powerful for these groups of young people. They were very positive often about the schools they were in because they were the first places they hadn’t been bullied in.”

She also feels the mainstream is becoming less tolerant of disability, and that the effect of much of the positive work on inclusion that CDC did with ALLFIE, with similar organisations and with people like Richard Rieser around the time of the Disability Discrimination Act had been lost. “One of the things that shocked us was the amount of children who should have done really well in mainstream education and were not there because reasonable adjustments had not been made.”

“One of the groups of children we saw were children with autism, who were bright, able kids who were going to get 5 A to Cs, or they should have done, but people were just not making the adjustments. People were expecting them to be different than they were. They were young people with autism in massive schools without safe spaces. Often they would come out of that because their mental health wouldn’t cope, they’d get very anxious about it, or again they would do something, usually to do with behaviour, that would take them out of the school, and the minute they did that the future for them in terms of success would start to go down fairly quickly. Yet we know for many of those people fairly basic reasonable adjustments in schools can meet their needs.”

When ALLFIE submitted evidence to the review we were struck by how much people’s stories reflected huge forces which have shaped their lives negatively and left them feeling quite powerless, and we asked Christine what she thought those forces were.

“We’ve now got this huge array of different ways of running education whether it’s free schools or academies or local authorities. What we don’t seem to have behind that is a set of standards for all children.” She also identified that this had created a challenge in the system about who provides specialist services, such as peripatetic hearing impairment teachers, and who pays for them, where they were previously the responsibility of the local authority and a shared resource for all local schools.

Then the diversity of schools can lead to discrimination. “It appears that some chains of schools are excluding and other chains of schools aren’t. When there’s that narrow attitude of ‘how do I meet my targets? Well I don’t take children who aren’t going to hit them,’ then actually that’s fundamentally wrong.”

She also cited cuts to NHS services and social care, and not just education: “People have retreated back into their silos. The NHS does only what it has to do, schools only do what they have to do. The children we represent need really good creative joined up commissioning. We wanted to be clear that austerity bites.”

As well as individual factors which triggered a child being sent to residential school, whether a school exclusion, difficulties with their social care package or family breakdown, she was clear that local authorities were experiencing problems with capacity due to a bulge in the child population, and also lack of expertise which was often about poor planning in the system. “The best local authorities plan. They understand who their children are, they’ve got really good data, they understand place planning. Local authorities that are in more trouble just react: ‘Oh my god, what have we got to do here?’ Some of that is to do with the fact a lot of their staff have gone [due to cuts], but some will just always be better than others.”

We also discussed why some parents actively seek residential schooling for their child. Christine had found that some, particularly parents of autistic children, thought specialist provision such as the “24 hour waking day curriculum” would give their child the best chance in life, but there was also a group of parents who struggled with their child’s care and found residential schooling more acceptable, believing that it would meet all their child’s needs, rather than leaving them to battle with separate authorities themselves.

“We’re trying to untangle these things because they’re difficult. Families should get choice, they should be able to choose lives for their children, they should get the very best. But is the very best you want as a parent the very best you want as a child? Are they things that we have really good conversations about? I’m not necessarily sure they are. And if we decide we’re going to fund these children at this cost and we take it out of the local system, are we then putting less money in the local system for more children? I think there are some really difficult dynamics behind this.”

The report had not been written when we met so Christine couldn’t tell us exactly what her recommendations would be, but she did define for us what a good inclusive education system would look like for her: “I’m not saying it was perfect before, but I think we have moved away from a good inclusion system and I think one of the things we will want to recommend back to government is an inclusion strategy. I think a good inclusion system is an education system that sees its purpose not solely about academic achievements, although I’m not saying that’s not important, but about educating children to be part of a whole society where everyone matters. I think we have got a system that’s become increasingly narrow about defining a cohort of children that succeed, and if you define a cohort of children that succeed you in effect define a cohort of children who fail.

“There are some really good inclusive schools. The quote always in my head is from a head teacher from a school in the North East. ‘We may be an 800 place school but we have 800 individual children with 800 individual sets of needs and a good school meets 800 individual needs.’”

“One of the challenges we wanted to bring out in the review is that assumption that because a decision was made at 9 that your child should be in this school does that mean they’re there till they’re 18? Should we see more children going for what is needed and coming back again?” The review may propose that residential education should function more as a system of shared expertise, which a child attends temporarily with the aim of assessing them and returning them to their community with a package of support. “One of the other things that happens to children is when they move away and then become young adults they have real issues about friendship groups and circles, so should we assume that going away is for the whole of your childhood or should we ask some questions about that?”

“One of the most frightening things about the first review that I did was watching children come out of their community at nine, ten, eleven, twelve and never returning.” She was uncomfortably reminded of her past work in long stay hospitals and that era’s attitude that removing disabled children permanently from society was “kinder for them”.

However she also felt there was a balancing act to get right. “One of the things we got wrong when we closed hospitals and introduced inclusion is we forgot that people make friends with people like them. So you’d have one disabled person in an able-bodied environment and isolate them entirely, because actually they wanted to talk to people who shared the same views, who shared the same challenges. There’s something about how you build those friendships and those worlds without saying the answer is to put all the disabled people in this environment and they can all talk to each other.”

We also asked how CDC could enable children to understand that they have rights such as the right to mainstream education, and Christine explained that just telling people about rights is not enough – children and service providers need to understand how these work in practice, so CDC have produced toolkits for practical activities, and worked with a theatre company acting out some of those situations.

We were also interested in how she felt about the challenges of representing a sector which has often very mixed views. “I think we are on a road to citizenship for young people. I don’t think we’re anywhere near the end of that journey yet. And I think each generation that comes along has to challenge for the next. Organisations like ALLFIE, because they have disabled people at their heart in a way we don’t, are part of that challenge. Looking forward I think we will keep falling out with ALLFIE and I think it’s a really important thing that we do, provided in the end what we have is a constructive dialogue. You’re the essential grit in the machine. One of the things I’ve learnt in my career is the need to learn from disabled people about their experiences.

“I recognise regularly the frustration of the disabled people’s movement that things do not seem to progress in the way they need to and most of the time that frustration is one that’s shared. I might regret this but I would encourage organisations like ALLFIE to keep being frustrated and to keep pushing us to move and to change.”

Progress to Inclusive Education in South East Asia: What are the issues?

Monday, October 2nd, 2017

By Richard Rieser, World of Inclusion

I recently returned from Sarawak, Malaysia, attending and speaking at ICSE 2017 (2nd International Conference on Special Education), held under the aegis of the South East Asian Ministers of Education Regional Centre for Special Education. This represents 11 countries in the region. The Conference was held under the theme Access and Engagement and was to implement the SEAMO SEN mission:

“Providing access and engagement for children with Special Educational Needs must be given priority and emphasis by addressing opportunities and barriers such as diverse learners’ needs, designing and implementing accommodative curriculum suited to the needs of children and responsive curriculum strategies in teaching and learning.

“The SEAMEO 7 Priority Areas:

  1. Early Childhood Care and Education
  2. Addressing Barriers to Inclusion
  3. Resiliency in the Face of Emergencies
  4. Promoting Technical and Vocational Education and Training (TVET)
  5. Revitalising Teacher Education
  6. Promoting Harmonisation and Higher Education and Research and
  7. Adopting the 21st Century Curriculum form the basis for this conference.

These areas necessitate the urgent needs to provide and engage children with special educational needs in educational settings that are meaningful and inclusive. Quality education and support services would ensure children with special educational needs engage in educational settings that stimulate their holistic growth and give them the necessary skills to live independently and contribute to the betterment their lives.”

The first thing that shocked me about the conference was how deeply ingrained was the concept of Special Educational Needs (SEN). It seemed the thinking and practice of SEN was the bedrock of the region’s thinking and that inclusion of disabled people and their rights were a veneer placed on top.
Though some progress was reported towards more disabled children being in mainstream in Singapore, Malaysia, Vietnam, Indonesia, Philippines, Thailand, Lao, Myanmar and Cambodia in every case there was still a very strong distinction between special needs teachers and mainstream teachers. There was still a reliance on special schools for sensory impaired students and those with severe physical impairments. When most speakers talked of inclusion they were talking of students with mild to moderate impairments on the autistic spectrum, ADHD and learning difficulty. But with the exception of the small and prosperous Brunei Darussalam, which has no special schools as a conscious choice following the Salamanca Conference in 1994, and Timor Leste that does not have special schools as until recently it was a far flung outpost of Indonesia; there is an underlying reliance on special schools and special educators.

Apart from the obvious contradiction with signing and ratifying the United Nations Convention on the Rights of Persons with Disabilities Treaty and the Sustainable Development Goals which have quality inclusive education for all people with disabilities written into them, what are the problems with this approach?

Dr Yasmin Hussein, the organiser of the Conference and Director of SEAMO SEN, ‘stressed that it was pivotal for special children to be given the rights to live, to learn, to grow and to have equal opportunities to lead their lives.’

Continually referring to children and young people with a whole range of impairments as ‘special’ invokes the old paradigm of the individual or medical model and leads to solutions based on charity and individual responses rather than a rights based approach that views inclusion as a social and political issue. The organisers of the conference would argue they are doing this and indeed there was much evidence of initiatives of conducting community-based events to increase awareness and acceptance of individuals with disability in society, setting up centres throughout the region (already 21 to which this year four more will be added) specifically meant to undertake training and research programmes in Special Education. SEAMEO SEN has been promoting awareness and the importance of including disability issues and concerns in all specialist centres. Prasert Tepanart, Deputy Director of SEAMO SEN, said “With the current global education direction, the education of the most marginalised and vulnerable group especially children with disabilities has been the focus of all programmes and activities in all SEAMEO centres…. Education is the momentum that directs changes and transformation of mindset and attitude and eventually the history of a nation. With education, the future of marginalised groups especially children with disabilities can be changed and improved.”

The problem is that the transformation of education systems to inclusive has to be across the whole education system. Mainstream teachers must have mandatory training and all colleagues in schools need regular training on inclusion.

When we drafted Article 24 of the UNCRPD in 2005/2006 in New York, we specifically left the words special educational needs out because it ideologically stands for disabled people’s isolation, segregation and mistreatment and not our empowerment and inclusion. Having engaged with 650 colleagues from the region and beyond on the issue of developing inclusive education in South East Asia it seems the continual use of ‘Special’ and ‘Special Educational Needs’ is a real barrier to progress towards inclusion in the region. This is more than semantics.

Whatever the decrees, laws and treaties say, sticking with the SEN model undermines the paradigm shift to rights strongly endorsed in General Comment No.4 of the UNCRPD Committee. It signals business as usual to educators. That there is someone else with expertise and they are the people responsible for educating disabled children. It also reinforces age old prejudice and myths in the community towards disabled children. In the end sticking with the ‘special’ label is disempowering. There were several speakers putting forward a strong disability and rights perspective at the conference. However it feels to me that the normative waters of SEN have swallowed these contributions and the change that is desperately needed will not occur. There are not anywhere near enough special schools and it means that with the exception of some of the smaller and richer countries in the region such as Singapore, Brunei and possibly Malaysia the vast majority of disabled children are still not in school, probably half of 3.48 million. Inclusion and rights needs to be at the centre of a root and branch overhaul of the education system. The old SEN model left behind by colonial masters needs jettisoning. There will be many vested interests who will oppose this approach, but is the only one that will deliver full inclusive education in South East Asia.

 

The importance of advocacy for people locked up in special education

Thursday, May 25th, 2017

By Dr Paul Doyle

This article is from the Summer 2017 edition of Inclusion Now. Join ALLFIE to receive three issues of Inclusion Now per year.

I cannot remember being asked by anyone in authority whether I, at least, had an opinion about going to a residential special education needs school. I was perfectly happy at day special education needs school in Manchester, where I live. I was doing really well at this school, I had lots of friends and, of course I was living with my family.

I have no idea how it came about but the special education needs school in Manchester was changing. This school was originally for children and young people with physical impairments, and now it was going to become a school for children and young people with both physical impairments but also for children and young people with learning disabilities as well.

When I was about eleven years of age I heard the people at school starting to talk about me going to another school, I did not understand this. I cannot remember asking my mother and father about this. The next thing I knew was that I was talking with my family about going to a boarding school, I have two older sisters, one older brother and two younger brothers. I said that I would try the boarding school, never really knowing the full implications of this.

This, going to boarding school miles from home and away from your family for three or more weeks at a time is an enormous event in a young person’s life. Nobody, a teacher in school, or anyone from the local education authority, ever spoke to me about going away to school. All young people, especially young people with impairments and/or disabilities should be involved in making decisions about their own future, this is absolutely crucial.

Now I know that people in authority did not care what I, as a twelve year old child, thought when it came to thinking about my future. In hindsight it was as though I went to a residential special education needs school at the convenience of the special school in Manchester and the local education authority. It should have been my decision, or at least my parents’. There was nobody, from what I can remember, who acted on our behalf to explain what it would be like for my family and I if I went to boarding school. Nobody spoke up for us.

The boarding school was in Kent, miles away from my family. I absolutely hated this school. It was horrible. A few years ago I asked my siblings to write what they thought of me going to boarding school. My younger brother, who was ten years of age at the time, said that the school did not look a happy place, and this was when I had just arrived. One of my sisters wrote that when I was at boarding school it was like I was ‘put on to one side’ for a while.

Some children attend residential special school from a really young age. I was thirteen years of age when I first went down to Kent. Whilst I was there it was like we, the other young people and I, were cut off from the rest of society. Children who go to a special residential school at four or five years old may never know what it is like to be part of a society. Once they have left school, providing that they do not get put into a residential special education needs college, they could be fearful of the wider society as they would not have much experience of life in the community at all.

Continuing with the theme of the previous paragraph, before I went to boarding school I used to go out with my eldest brother and watch him play football with his friends; when I went to boarding school all that stopped and it never rekindled again when I came home from residential special school for good. Whoever decides that children and young people with disabilities should go into residential special schools and colleges takes away their family life and friendships and sometimes it might be hard to get this back again.

The more time I spent at boarding school I could feel that the teachers were caring less and less about my education. I was starting to do what I had already done at the school in Manchester and it was extremely frustrating. I tried to tell the teachers about what I was feeling but they just did not take any notice of me – it was awful. I did not have anyone to talk to.

There must be thousands of people with disabilities who have had, or are having, similar experiences to me. To quote my sister again, “It was like I was put on to one side for a while.” I was really lucky because whilst I was at boarding school my mother and father never left it three weeks without seeing me, they came down to visit me at school in between holidays. A lot of the children and young people at my school did not see their families for six or seven weeks at a time.

During the school holidays and when my mother and father, and some of my siblings, came to see me in term time I could talk to them and tell them how I was feeling. At one point we, my mother and father and I, thought they were coming to bring me home for good. The headmaster wanted to talk to us in his office. The headmaster said that if I was to go home at that time (I was fifteen years of age) there would be nowhere for me to go. My previous school in Manchester had changed so I could not go back there. I stayed at the residential special education needs until I was sixteen.

I actually felt like a prisoner at this residential special school. It was bad enough during the week when classes were on and hardly anyone took any notice of me. The evenings and weekends were dire. I had no real friends at school. All I did in the free time was go around school in my electric wheelchair not talking to anyone. I could not concentrate on anything. At home I would watch the television with my family but at boarding school I just could not get motivated even to do this.

The Importance of advocacy  

It is clear from the introduction that I needed someone to speak up for me, particularly at boarding school. If someone had told me what it was going to be really like for me at residential special school I never would have gone. Having said this though, I still do not know, even to this day, whether I did have a choice of going to residential special school.

Sometimes, as the man I am now, I wonder whether I should have told people what I thought of boarding school, but I was never encouraged to do this. By reading the last sentence you might think that I blame myself for going to residential special education needs school and not doing well. Looking back I think that I did have the capacity to speak up for myself but, as I said before, this was never discussed nor encouraged.

As I said in the introduction many children and young people have been in residential special schools and colleges for almost their entire lives. They literally may not know what goes on outside the walls which contain and control them. I use the words ‘contain’ and ‘control’ for the people who work in the typical special education needs school see that it is their job to protect children and young people with disabilities against the outside world. This so-called protection does not do anyone any good. First, children and young people who are stuck in residential special schools and colleges will have no idea of what it is like to live alongside people who do not have disabilities. Second, non-disabled children and young people will not have any understanding of people with disabilities.

All the things that I have said here require some form of advocacy. Take myself as an example: before I went to residential special school, I had no idea what this would entail. It was after asking my mother and father that I knew where and how far Kent was. Nobody at my special school in Manchester told me just how far Kent was and how much I would miss my family. One could say that they were not to know, but it was evident to everyone that my family are very close.

When I think about it now I cannot remember any of the teachers at the school in Manchester talking to me about going to boarding school. Some kind of guidance on this transition may have stopped me from going to residential special school and my positive educational prospects might have begun earlier.

The sense of being ‘locked up’ in residential special school was a very real experience to me. Thinking back it was a frightening ordeal being at residential special school on your own more or less. What I mean by ‘being on your own’ is not having the confidence to talk to people and tell them how you feel. I knew what  I wanted to say to teachers, that I wanted to do more academic work and, indeed, I knew that I was able to do more work on the basis of what I had done at my previous school. If only I had an advocate.

Advocacy, speaking up for oneself or having someone speak up for you is a really important concept. My PhD thesis is about advocacy for young people with disabilities. The fieldwork for this piece of work was set in special education needs school. The young people at the school and I held advocacy sessions within the school. There was one particular young person who was around seventeen years of age, who was about to leave school in a couple of years’ time and he had no method of communication. This must have been absolutely horrible and very frustrating for him.

Staying with this particular young man as an example, I thought that this special education needs school, where I carried out the fieldwork for my PhD, was relatively good for a special school but when I knew what was happening with this young person it tarnished my feelings towards the school. This scenario seemed strange to me. The teachers at the school were keen for me to talk to the young people, and yet, when it came down to them talking to their own students they just did not listen.

From my observations when I was at my own residential special school, and I had a lot of time to observe as the teachers did not give me anything to do, I noticed that quite a number of the young people were learning. I felt that the teachers at my school did not have enough patience with the children and young people who had the severest of impairments – I include myself in this category. Going back to the young man at the special school where I carried out the fieldwork for my PhD thesis, I found out that he could indicate ‘Yes’ and ‘No’ by moving his eyes up and down. I could not believe how simple this was and yet the school failed to recognise that he could do this. It must have been so frustrating for him. I feel that having multiple impairments myself, including a speech impairment, I was able to understand what it is like to have people not know what I am saying, so infuriating.

It is absolutely vital that people with impairments and / or disabilities are listened to and advocacy is an integral part of this. Giving people a voice enforces their role in society – special schools do not consider this an option. Ideally there should be no special education needs schools at all and there should be a whole new education system where children and young people with disabilities and / or impairments and children and young people who have no disabilities and / or impairments are educated together. At the time of writing, with austerity still going on and the unstable economy, I cannot, unfortunately, see total inclusive education happening anytime soon.

Every special school should have at least four or five advocates for the children and young people to talk to. The conversations between children and / or young people should not be just about what they want to do once they had left school but they may want to know what was happening in school. Those who have brothers and sisters may be listening to them about what they are doing at their school and the children and young people who attend the special school may be thinking why this was not happening in their school. An advocate would be able to help to voice their concerns with the teachers, this is essential.

The United Kingdom is not in an ideal situation economy wise and total inclusive education is not going to happen in the near future. Another reason that advocates need to be working in special education needs schools is talk to the children and young people about what is happening outside of their ‘closed’ school life. This would prepare them for the unknown. Life beyond special schools is unknown to the children and young people who attend them because the teachers, personal assistants and therapists who work in these establishments think that they have to ‘protect’ children and young people with disabilities from the rest of society.

Children and young people with disabilities and / or impairments do not need ‘protecting’ from society. All special education needs schools and the people who work within them think that they are doing children and young people with disabilities and / or impairments a favour by keeping them from the so-called troubles of society. Advocates need to keep children and young people informed of what is going on in society.  People with disabilities and or impairments need advocacy whilst they are locked up in special education needs schools.

What does inclusion look like?

Thursday, February 9th, 2017

This article is from the latest edition of Inclusion Now, which you can read by subscribing.

We are four researchers working within the Faculty of Education at Edge Hill University who wish to share some findings of our ongoing research that had two stages. In the first stage of the research, school children took photographs of their understanding of inclusion in and around school. In the second stage, some of the images taken by the children were then shared with adults working in the field of education, to elicit their responses and interpretations of inclusion.

Inclusion within education settings has, through policies and social justice campaigns, become integral to much school policy and practice. It is often associated with belonging, participation and respect for others (CSIE 2015). Yet what is understood by the term ‘inclusion’ remains open to interpretation. In order to investigate in some depth what different people might understand about what inclusion might mean and what it might look like in practice, we decided to embark on a research project to explore the views and interpretations of both school children and adults working in education.

In the first part of our study, a photo-elicitation research method was used whereby children in four schools (two primary and two secondary) were given disposable cameras and asked to take images that they believed represented inclusion or exclusion. The children were asked to explain either verbally or in writing what the photographs they had taken meant to them. This offered a window into their worlds and their understandings of inclusion for us and for their teachers. They were also asked to give a small amount of information about themselves, such as gender, age, and whether or not they identified as having an educational need.

The photo-elicitation method was chosen because we felt this methodit encouraged the active engagement of children and young people in research rather than conducting research upon them. It was felt that children’s perspectives and experiences around inclusion might be heard more cogently than through traditional research approaches, such as interviews or observations. Using an approach in which children produce photographs and annotate them as they choose is, we felt, suitable for children as it provides involvement and ownership. Such an approach also assisted those who communicate differently or who have a preference for visual rather than verbal communication.

In the second part of the study, thirty of the photographs taken by the children were selected by the research team and anonymised via software that ‘cartoonises’ the image. These altered images were then shared with children in four different schools (two primary and two secondary), groups of trainee teachers and other adults working in the field of education during conferences, workshops or teaching sessions. The groups of adults were shown the photographs and asked for their views about whether they thought the images taken by the children represented inclusion or exclusion and to discuss and explain their reasoning. They were not informed of the children’s interpretation until the end of the group discussions. The intention of this process was to consider how personal experiences of school life, as pupils or teachers, might influence how they interpret practices that are intended to be inclusive. The aim was to go beyond defining forms of inclusive practice and instead find a way for trainee teachers and other adults working with children to ‘hear’ children’s voices, and access the ‘multi-voiced-ness’ of children’s lived experiences relating to inclusion.

To provide a flavour of what is emerging from our research, three of the many images taken by the children are shown in the following section.

 

The Baking Photo

A boy sits with a cupcake baking try in front of him. Two adults cooperate around him to put cake mixture into the tray.

The Baking Photo

Photographer:
9 year old boy who self-identified as having moderate learning difficulties, based in a primary school. He said:

“This image is of inclusion – with grown-ups to help if you can’t do it yourself”

Examples of responses to cartoonised image
Boy aged 9 with a moderate learning difficulty attending a mainstream primary school:

“This is exclusion, adults always take over and we can only watch and then they say ‘look what X has done’ but I haven’t”.

Adults:
“This concerns me. The adults are doing the activity and the child is doing none of it himself”.
“Boy looks needy and not happy with the whole experience”.
“The boy is getting one to one help from his teacher”.
“(I see) Unhappiness, no acceptance of what child can do, smothering”.
“Inclusion – Child in middle is being helped and they are trying to involve him”.  

The 9 year old boy who took this photograph saw this as inclusion. The comments by the adults, however, tended to show a discomfort with the image, revolving around the children and ownership of the baking activity. The positioning of the two adults and the two children and how this was framed in the image seemed, via their responses, to imply exclusion. Some interpreted the boy in the centre as receiving personalised support, while others showed concern, suggesting that the teacher was ‘smothering’ the child or taking over control of the task. Concern seemed to revolve around the relationship between the adults and children and the level of engagement each had in the task depicted.

 

The Mobile Phone Photo

Two girls look at something together on a mobile phone

The Mobile Phone Photo

Photographer:
Twelve year old female pupil in a secondary school, who did not identify as having educational needs. She said:  “Using your mobile phone to keep other people out. Secrets.”

Examples of responses to cartoonised image

18 year old female student: “Inclusion – looks like friendship, not forced or organised”.

Adults:
“Inclusion as both engaged”.
“Exclusion: girls together sharing something on screen of the mobile. Looks to me like they are finding amusement in something not particularly nice on the phone.”
“Don’t know what they are doing on phone, could be bullying could be asking more friends to come out”.
“Inclusion –Both girls appear relaxed and happy in each other’s company”.
“Mobile phones – exclusion for poorer children”.

There were similarities with how this image and the previous baking image were perceived. With the mobile phone example, responses identified the image as either being inclusive, with friends sharing something, or as friends excluding, or even gaining amusement from possibly bullying others. The differing suggestions appeared to be predicated on the same aspect of the image; the assumed intimacy between the girls, portrayed by their physical closeness and body language and an assumed distance between them and other pupils not portrayed in the picture. Perhaps these differing interpretations also point to a wider issue of how mobile phones, and the social media accessed through them, mediate relationships between people.

 

The Smiling Photo

Two children next to each other are smiling

The Smiling Photo

Photographer:

Twelve year old female pupil in a secondary school who did not identify as having educational needs.  She wrote:

“Inclusion. Friends include each other in having a good time”.

Examples of adult responses to image

“Their expressions are happy”
“Gender and ethnicity = inclusive?”
“A shared moment – positive.”
“Finding the same thing funny.”  
“Facial expression of girl seems very happy”

In contrast to the mobile phone image, the responses to the smiling image were consistently positive, focussing on the emotional expressions of the two teenagers pictured and their close proximity to each other, with attention given to the relationship between the two people in the image. The more positive views surrounding interpretations of this image may be because, as well as the two children appearing happy, physically close and comfortable in each other’s presence, they are looking directly at the camera suggesting an openness or sharing of this emotional warmth beyond themselves, and with the photographer.

 

We are not suggesting that one view is more accurate or has more value than another when it comes to ‘seeing’ or capturing inclusion. Our interest is in understanding why those involved with the research, both children and adults can offer different and often contradictory views around inclusion and what they feel it is, or ought to be. The use of photo-elicitation as a method of research created the opportunity to access different points of view about what constituted inclusion or exclusion, or somewhere in between. The children and young people interpreted the image through the lens of their own experiences and commented accordingly. This certainly seems to be the case with the second boy who commented on the baking image by saying “exclusion – look what (name) has done, but I haven’t”. In the case of adult interpretations of the images, rather than put themselves into the position of those in the image their discussions circulated around space, place, positioning or a modification of presence. For example, there were many comments such as ‘it would be inclusive if x moved here…’. While the use of photo-elicitation as a method of research created the opportunity to access different points of view about what constituted inclusion or exclusion, few made explicit references to whether practices were fair, equal or just.

In this article we have only shared a snapshot of our research and a few comments relating to just three photographs. What we are hoping to do is gather further views from both children and adults. In particular, we are interested in hearing the reactions of Inclusion Now readers to the images and the comments. Are the images inclusive? Do you agree or disagree with the views offered? Moreover: what is inclusion? Can it be captured? How do we know that inclusion has ‘happened’?

We have a small amount of funding to extend this project and are able to offer workshop sessions with groups of children in schools around the UK to gather further views and experiences about inclusive education. If you would like to discuss hosting a workshop, or anything in relation to this research please do not hesitate to contact us via Dr Clare Woolhouse.

Clare Woolhouse (corresponding author) Linda Dunne, Fiona Hallett and Virginia Kay, Edge Hill University

How did I do as a blind dad?

Thursday, August 11th, 2016

I know, I’m not the only parent to worry about how good a job I’ve done.  But, being a father with a profound disability gives  me some additional pause for thought.  As Caitlin, my only child, prepares to celebrate her 21st birthday, it’s an obvious moment to take stock and recall some of the challenges of being a blind parent.

Since Caitlin left home for university, she’s begun to gain some perspective on her parents and upbringing.  During a recent trip home, Caitlin and I had a few very frank discussions about what it’s been like having a blind Dad and how my obvious limitations have affected her. Caitlin admits, she finds it difficult knowing how to introduce my disability to new people she meets.  She dreads the awkward silences and same old questions that can follow – and it pains her when these responses come from people she has reason to admire and respect.

“It doesn’t matter how many times they’ve heard the one about the blind man who climbed Everest,” she complains, “they still ask the most basic questions about how you get dressed and get around.  I can’t explain, it makes you sound sort of …”

“Helpless?” I offer.

“Yeah, I suppose that’s it.  And then, I think they must see me as unusual or different.”

Caitlin’s never enjoyed being different or standing out.  And, knowing this, I’ve always tried to shield her from the stereotypes and prejudice I regularly encounter.  As Community Care, the journal for social care professionals notes: “children whose parents have additional support needs can acquire labels which are stigmatising and isolating”.

That’s why we always tried to get Caitlin into schools with a positive record on the inclusion of disabled children.  If any difficulties arose, we reckoned we’d be pushing at an open door.  Once, when Caitlin was nine, I presented a session to her class about Braille.  It was well received, and each child left the room with a Braille alphabet card, a secret message to de-code later and, so I hoped, the impression that Caitlin’s Dad, whilst different, was also an interesting and articulate man.

At secondary school things were more difficult.  Caitlin acquired the acute self-consciousness of a teenager and any parental presence at school was viewed as a potential source of embarrassment.  We received detailed instructions from her on what to wear and what to say in order to mitigate any loss of face: and one of Caitlin’s stipulations was that I should never bring my white cane.

Caitlin recalls, when she was 17, inviting her first serious boyfriend back to the house.  “I hadn’t mentioned to Tom you were blind and, because you and Mum had gone out to the theatre, I didn’t think you’d meet.  But you guys came back early and I remember us all standing round the island in the kitchen, feeling extremely awkward.  Then Tom reached out to shake your hand and I had to look away because I couldn’t bear seeing what would happen next!”

“Yes,” I offer, “but all credit to Tom for how he handled it.  And, later, the two of us got on really well.”

One of the standard questions Caitlin gets asked is, “who cares for who?”.  It’s a fair point.

Having one or both parents with a disability can shift the boundaries of responsibility and dependence, and there’s evidence to suggest it may have a detrimental impact on children.  Research commissioned by the Joseph Rowntree Foundation, examined the experiences of 60 young carers aged 16-25.  It concludes that: “Many children and young people who spend time caring for a chronically sick or disabled parent experience long-term problems in their own lives resulting from missed school and lack of qualifications or job opportunities”. The same study identifies an increased incidence of anxiety, depression and difficulties transitioning into adult life.

Caitlin never missed a day’s school on my account and she appears to be doing well at university.  However, it’s true that, when it came to the practicalities of child-rearing, there was often less available energy.  My disability meant there were tasks I couldn’t do and a whole lot more I could do, but only by slower and more circuitous routes.  Significantly, more than half the young people interviewed for the JRF research were living in lone parent families.  So, I’m lucky to have had a non-disabled partner to fill the gaps,  a job to bring in the money and a support network of friends for when the going got tough.

And yet, I still worry that my disability’s had some more subtle, psychological affect on Caitlin.  What about all those extra responsibilities she had to shoulder at an earlier age?  I try to remember when it was I first took Caitlin’s arm and she began guiding me.  We’re both surprised when I say, I think it may have been as early as six or seven.

Caitlin insists that guiding me has always felt like the most natural thing in the world.

“But surely,” I ask, “you must be permanently on the lookout for lamp-posts and hazards?”

“No more than when I’m walking by myself.  It’s like you’re an extension of me and I have a sense of the space we’re taking up.”

I remember, with pleasure, when roles were reversed and Caitlin was an extension of my body.  Once upon a time, before she got too heavy, I could simply strap Caitlin into the backpack and head off wherever I liked, using my cane.  I was in charge: the way Dads are supposed to be.

Collecting Caitlin from her child-minder’s every evening was something I loved.  I felt so proud, carrying her along while, over my shoulder, she  chattered on about her day.
So, it saddened me to discover that one of the other mums had been discussing with the child-minder how dangerous it was for me to be crossing busy roads with Caitlin.  I tried talking to the mother concerned, but she just couldn’t get it.  And it rankled with me all the more because I knew she was an intelligent, talented and sometimes sensitive person.

Caitlin describes a traumatic incident when she was six.

One day, standing by the window, she saw me coming in from work, blood streaming down my face.  My wife explained I was okay and that I’d had a collision with a carelessly constructed display outside a shop.  But, when a police car pulled up, Caitlin’s anxieties peaked.

“I can’t even remember what I felt.  Maybe, I felt angry with the shop-owner?  But I clearly remember sitting there, feeling distraught, wondering, what I could do to help.  And then it came to me: [Caitlin assumes the voice of a six-year-old] `I must write to the Queen`.”

My wife posted Caitlin’s letter and I assumed that was the last we’d hear of it.  Except, to Caitlin’s six-year-old way of thinking: if you’ve taken the time to write to someone, then, obviously, you expect a reply.  And, Caitlin’s confidence was rewarded.

“I remember the sense of proving you wrong, when I got a reply.  I remember Mum screaming with excitement as we opened the envelope!”

So, aside from spawning a royalist, how have I done as a parent?  Caitlin’s never suffered from any lack of love or attention, although thoughts about available energy influenced our decision not to have a second child.  Maybe there’s a connection between the young woman who now sees herself as especially “observant” and “sensible” and some of the added responsibilities she had to assume at an early age.  Although, as Caitlin points out: “I like being sensible – and who’s to say I wouldn’t have been sensible anyway”.

Mike Lambert, ALLFIE trustee

 

This blog is an extended version of this piece on the BBC website.

Are you a disabled parent? Have your say in the comment section below.

Film Poems by Heathar Barrett

Wednesday, March 11th, 2015

Sitting in the Darkness – A Film Poem by Heathar Barrett:

https://www.youtube.com/watch?v=ql3fTKCjdZk&feature=youtu.be

 

Delemere Forest – A Film Poem by Heathar Barrett:

https://www.youtube.com/watch?v=fdGWNhTLHB0&feature=youtu.be