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Allfie's Blog

How did I do as a blind dad?

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.

‘United’ Kingdom and the EU: What Happens Next for Disabled Students?

July 11th, 2016

Author Miro Griffiths

Miro Griffiths

The question raised by the title of this post cannot have a simple and definite answer. The circumstances of the Government’s decision to hold a referendum on UK membership of the European Union, which resulted in a majority of voters electing to leave, are incredibly complex. The potential consequences are too varied to draw a clear conclusion as to the impact this will have on citizens and fellow human beings living in Britain; nevertheless, it is not hard to see substantial concerns from disabled campaigners, their organisations and allies regarding the effect this will have upon the lives of those experiencing disablement. Similarly, this represents a sharp turn away from the slow progress in opportunities to shape international affairs and safeguard support mechanisms to protect – or enhance – the rights of disabled people, and towards a further concentration of power for influential, elitist actors who set the terms on rights and justice for their own benefit.

Whilst the European Union should be rightly criticised on many issues, it is vital to recognise the bureaucratic processes and frameworks that sought to address the inequality and marginalisation affecting disabled people and their families across Europe. Although disabled people’s living standards continue to be severely affected by current austerity measures, adopted by the European Commission and implemented by the member states, there has been a collaborative effort to bring together various grassroots movements and challenge those that seek to cause harm during this time. Furthermore, the narrative around the debate on leaving the European Union must recognise that certain groups, including the State, have attempted to undermine the EU at all times.

Regarding the impact of the referendum result upon disabled learners, there is now a concern as to whether various EU directives will be adopted – voluntarily – by the British Government. The work priorities of the Disability Intergroup, which aspires to promote disability issues within the European Parliament, will become insignificant as the eventual exit of the UK may result in the dismissal of any proposals put forward by the group. This means any recommendations adopted by the EU in response to the United Nations Committee on the Rights of Persons with Disabilities will not need to be implemented by the UK, nor will the state prioritise the aspirations of the European Disability Strategy. Both of these examples will create further marginalisation and isolation for disabled students.

Recently, John Pring from Disability News Service highlighted the significance of three pieces of European legislation – outlined by Lord Low – that aim to have a positive effect on disabled people: procurement by public bodies, web accessibility and air passenger regulations. EU treaties guarantee certain fundamental rights to all citizens of the EU and among those rights are the free movement of persons, goods and services. Such fundamental rights will no longer be guaranteed to citizens outside the EU; therefore, it can be assumed that the barriers encountered when studying will intensify as the rights of disabled students will be further dismissed by the establishment and any discussion on advancing social justice issues associated with education can easily be excluded from the corridors of power – more so than it is now.

The economic and social inclusion aspects of the Europe 2020 strategy aimed to explore the correlation between disabled people’s underrepresentation in employment and their overrepresentation in ‘early school leaving’. This analysis identified the negative consequences of cuts to social services and community-based support – a stance echoed by the economists employed by the International Monetary Fund, who are critical of these destructive policies. This is not to embrace Brussels bureaucracy, which has been integral to the decline of democracy; rather it is a reflection of the various social structures (economic, cultural and political) that affect the development and delivery of education for people across Europe.

It is not just policy developments that will be affected; the geographic mobility of disabled learners to pursue their higher education options across Europe will become further restricted. The introduction of a European Mobility Card will, inevitably, no longer be realised and there is uncertainty as to what impact the exit will have on the Erasmus Programme (an EU exchange student programme). The scholarships provided through the Erasmus Programme are essential for meeting the access needs of disabled students but many national and international students who require support will find their opportunities further limited. The neoliberal capitalist frameworks and privatisation methods infiltrating higher education institutions are reflected in disabled people’s lack of current participation in academia. The British state has already committed to dismantling the support mechanisms for under/post graduates and the State will eventually not be required to justify itself to those within the EU who are committed to increasing disabled people’s social mobility and access to education.

Finally, detachment from the EU will lead to the further disintegration of Independent Living organisations that received support from Brussels and Strasbourg – whether through the advancement of demands through European Parliament collaboration or through financial security provided by the European Social Fund. User-led organisations have been closing rapidly for some time and it seems likely that this will accelerate due to the State ‘reclaiming’ sovereignty, which effectively means the ruling elite will be able to impose their ideology without substantial resistance from within the political system.

This article has continued the discourse surrounding the consequences for disabled people in the UK following the EU referendum result. The battle to advance the inclusion of disabled people will continue and there is a desperate need to retain the strong relationships between grassroots social movements across Europe. Those who support the fight for inclusive education must continue to plant and nurture the idea for a future education system within the present one. The roots of the problems in the existing institutions still exist, irrespective of Britain’s membership status, and those who seek to marginalise, isolate and exclude disabled people from society must be brought to account.

Miro Griffiths is a Trustee at ALLFIE and a PhD researcher and teacher at Liverpool John Moores University.

Happy Birthday Dalai Lama

July 22nd, 2015

Is it just me or did anybody else sense Alan Yentob’s surprise when he asked the Dalai Lama, at the Edinburgh Festival, ‘Does music make you happy?’

I’m sure Alan, and many in the audience, did not expect the response, “not much”. After the initial laughter from the crowd, the Dalai Lama’s (DL) more detailed response provided the scenario of countries such as Iraq or Syria, where humans are killing each other and whether music being played would reduce their anger and violence towards each other. The DL’s response being “I don’t think”. Read the rest of this entry »

Inclusive School Health and Nutrition Programmes

April 15th, 2015

According to the World Health Organisation, approximately 93 million children in the world – 1 in 20 children aged 14 or younger – have a moderate or severe disability. The majority of them live in low- and middle-income countries, are not enrolled in school and have very poor access to the most basic health and nutrition opportunities. Whether it is due to poor data or a lack of knowledge and understanding, school health and nutrition (SHN) policy makers and programmers have previously struggled to visualize this group and respond effectively to their needs. These children have been left behind.

Read the rest of this entry »

Film Poems by Heathar Barrett

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

How Blind Victorians Campaigned for Inclusive Education

October 22nd, 2014

Disabled people’s voices are often missing from mainstream history, but texts reveal that a group of blind activists fought for inclusive education during the Victorian times:

http://www.bbc.co.uk/news/blogs-ouch-29327232

 

Inclusion and Me

April 30th, 2014

From a young age I knew that I wanted to be in mainstream education. I didn’t like the concept of being away from home and not being with my family. That was the biggest thing I didn’t like when I was little. Read the rest of this entry »

Blackburn College – Further Education and Inclusion

October 2nd, 2013

At a recent discussion day organised by ALLFIE, a talk by Ann Harwood centred on the educational provision at Blackburn College. This is a college which OfSTED describes as ‘outstanding’.

Ann is the ‘Additional Learning Support Manager’ at Blackburn College and during her presentation, she discussed, from her perspective, how the college worked towards creating an inclusive educational provision. Read the rest of this entry »

Exclusion with Inclusion? How can we tell the difference?

September 4th, 2013

If you are reading this, my guess is that you believe in inclusive education for all children and young people, however how do we know when inclusion becomes exclusion? To achieve inclusion in an inclusive setting, is educating a child outside of the classroom necessary? When and if it happens what stops it from turning into another form of exclusion? Read the rest of this entry »

Illegal Exclusions from School

March 6th, 2013

A recent report looking at the illegal exclusion of disabled pupils paints a bleak picture. But campaigners say that it could be the tip of the iceberg.

More than 50 per cent of the families with a disabled child who participated in Contact a Family’s Falling Through The Net report said that they had been asked to collect their child before the end of the school day because of a lack of support staff.

The report also found that more than 50 per cent of families had been told that a school activity or trip was unsuitable for their disabled child.

Unlike formal exclusions, schools do not have to report these sorts of exclusions to the local authority. It is not subject to review or external monitoring and can drag on indefinitely.

The report put the weekly level of illegal exclusions at almost 25 per cent and the daily figure at 15 per cent.

Read full article, including what ALLFIE had to say here: http://disabilitynow.org.uk/article/illegal-exclusions-school-bad-report