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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