Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.
Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.
Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.
As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.
As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.
Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”
Stanley Holes is, says his little brother Albie in the brief video diary above, simply “the best brother I could ever have.” Albie’s love for his 16-year-old brother is reflected in this short film which I just watched and wanted to share. Produced for Autism Wessex, the charity that supports Stanley, it stands out for me because it’s presented from a sibling’s perspective: “I love him very much,” says 11-year-old Albie of his teenage brother, “and he is very important to me and my family.”
Diagnosed with autism at three, with no speech and, as Albie says, “little understanding of the world that surrounds him”, Stanley hadn’t been to an autism-specifc setting until last year when he started Autism Wessex’s Portfield School in Dorset. Underlining the vital need for autism-specific support, only now is Stanley receiving proper speech and language therapy – and he’s thriving on the specialist care and education. In one of the previous schools he was at, his family was told that as Stanley was autistic, there was no point in him getting speech therapy since his condition made communication impossible.
Stanley was regarded as a child whose behaviour challenges, his complex needs mean he is prone to anger and violent outbursts (“episodes”, as Albie explains in the film). Yet his story shows that even in complex cases, positive outcomes are possible.
Stanley has started to shows more awareness of his surroundings, and is becoming more independent, using signing with more confidence. Younger brother Albie, meanwhile, is more assured about talking to people about his older brother and how autism affects him and his family’s life.
Stanley’s family realised after a few short months that he seemed much happier at his new school compared to previous special needs environments; as Albie says in the film, “It’s important for me to know that while I’m having fun, Stanley is having a great time too.”
Stanley is a weekly boarder at Portfield, coming home for the weekend, where Albie his parents, plus fellow siblings Mabel, 15, and Elsie, 7, are keen to spend time with him. Before starting at the school, as their father Paul says, Stanley’s behaviour was having an adverse impact on his siblings. Now, says Paul, the change in the family dynamic and in Stanley is “the difference between living and existing”.
One glance at James Lake’s giant 3D portrait of baritone David Rushbrook, and you may never look at a cardboard box the same way again.
Lake’s showstopping sculpture, created through the painstaking layering of cardboard, is intended to move, sing and perform alongside the other performers on stage (the head has already featured alongside the opera singer in Glyndebourne).
As the artist explains on his website, he chose the “inexpensive, commonplace and recyclable” medium because he “wanted to sculpt beyond the traditional materials and without the need of an arts studio”. Lake’s right leg was amputated after bone cancer at the age of 17 and his work focuses on humanity, strength, and vulnerability. His aim is to create work that breaks down the barriers in the art world.
The giant piece of Rushbrook, who has a learning disability, is just one big reason to visit Shape Arts‘ pop up multimedia gallery in London, Shape in the City, which is now open until May. The disability-led arts charity works to improve access to culture for disabled people and Lake is one of 30 disabled or deaf artists featured over five floors and 60,000 feet of exhibition space.
Lake’s 3D work head is shown alongside prints, paintings, film and video, poetry, performance art and installations. The showcase features established as well as up and coming artists plus pieces from the London 2012 Cultural Olympiad programme: ‘Unlimited’.
Here’s a bit more information about three other pieces on display:
Lake’s life-size Sitting without Purpose depicts his father during redundancy, aiming to reflect a man contemplating the challenges of life.
Visitors to the exhibition can watch Noemi Lakmaier live or via webcam painting 500 pairs of shoes in the kind of paint used to mark accessible parking bays in homage to her 2008 piece Experiment in Happiness. Lakmaier’s work explores ideas of the “other”, such as how the individual relates to surroundings and identity. By the time the pop up gallery closes, it will be filled with hundreds of painted shoes.
Chrisopher Sacre‘s artistic epiphany, as he himself has said,”may have arrived in an unexpected form” – but his work has been transformed since discovering “a happy marriage between condoms and plaster”.
* Shape in the City, in partnership with Photovoice and Action Space, 40 Gracechurch Street, London, EC3V 0BT, 10:00am to 2:00pm. For more information email firstname.lastname@example.org
The Fabulous Raana Salman
What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.
You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”
You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.
You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”
“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.
You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.
You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”
You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.
* The film Mission to Lars will be released on 8 April, with proceeds going to Mencap to help support people with a learning disability and their families. The film follows Tom Spicer who has Fragile X syndrome, a form of autism. He has a dream to meet his hero – Lars Ulrich – and his sister Kate tries to make that happen.
Down’s syndrome is a genetic condition caused by the presence of an extra chromosome and affects one in every 1,000 babies; there are around 60,000 people with the condition in the UK.
The small group of photographers whose work forms the exhibition all have experience of having had children with Down’s syndrome; the collective came together 10 years ago to create a series of works for Down’s Syndrome Awareness Week (this year’s awareness week ended yesterday).
Among the photographers involved in the ongoing project is Kayte Brimacombe, who documents social issues and whose previous images for the awareness week can be viewed here.
The art and awareness project has toured the UK and Ireland since then, visiting seven different countries. This week’s show reflects the body of work created so far and coincides with a special book marking the work created so far.
A wider range of images can be seen on the project website and admission to the show is free. It’s open from 11am – 6pm until Sunday 31 at the gallery@oxo and Bargehouse.
If only more people had the chance to develop in confidence like Laura Minett.
Laura, who I interviewed for a Guardian social care piece today, works as an expert by experience. Her part-time role through the charity which supports her, Choice Support, means monitoring and inspecting social care services on behalf of social care watchdog the Care Quality Commission. The self-assurance she has developed thanks to the job means that when I misspelt her surname during our interview, she politely – but firmly – asked for my pen so that she could write it out for me herself.
Laura, who has a learning disability, told me she is driven by helping improve support for people who may be less independent than her. As she says in today’s piece in the Guardian: “I like getting out and about meeting people and thinking ‘maybe that’s good maybe that’s bad’. I like having a job and talking to the service users – it’s about their quality of life.”
The views of people who use social and health care services are so often not taken into account, something which a major inquiry into health treatment of people with learning disabilities found this week. Involving people who use services in improving the health and social care sector is vital, but so often consultation is nothing more than lip service.
Not so with the experts programme it seems. Another expert I met, Laura Broughton, stressed that paid work and the recognition that her opinion is valuable has made a huge difference to her life. Both the experts explained they have spotted things that could be improved in residential care (simple things, even, like offering people a better choice of food and drink) and told me that individuals in care tell them their concerns or wishes much more freely than they would a professional or full-time inspector without their personal experience.
She has been an expert for just two years, but already speaks in public and to social care professionals about her role. She walked into our meeting relaxed and confident. “I was quite different before doing this,” Laura told me. “I’d never had job before, certainly not in offices, I was more shy. Now I’ve done the experts work, Choice Support is getting me involved in slightly different things as well. I’m training [Choice Support staff and CQC inspectors] and have done presentations and workshops. It’s exciting…I’m travelling quite a lot and getting to know the country.”
Here is some more from the two experts in their own words, which both women previously shared on the CQC and Choice Support websites.
Laura Minett: “If someone said, “What is an expert by experience?” I would answer that I am a person who has a disability and who has first hand experience of using services provided by both health providers and social care providers. I use my experience to talk to others to find out what they think about the care they are getting and if it is good enough for each individual using the service.
I work with different inspectors and have already visited lots of different services like hospitals, a residential college, care homes, assessment and treatment units and secure units. I have recently been part of inspection teams involved in the National Review of Learning Disability services.
My main job is to find out about people’s experiences of the care they receive. The inspector tells me which of the 16 outcomes I need to prepare questions on to ask on the inspection. We arrange a meeting time for the day and go to the service unannounced. This means the provider doesn’t know we are coming. I use my experience to find out what they think about the care they are getting and if it is good enough for each individual using the service.”
Laura Broughton: “Being part of this review was a good experience for me. It gave me the experience of what it is really like for other people who have a learning disability. What happened at Winterbourne View was terrible and should have never happened.
Working as part of a team with inspectors was exciting. The work was exciting but difficult too. Sometimes some of the places I visited were not pleasing , they were challenging.
Some of the people I met should have more help in getting a better life. They were often bored and distressed and staff talked to them not as adults but as though they were children. Some of the people weren’t treated as individuals and certainly not in a person centred way. I felt some people didn’t get the opportunities they should have because they couldn’t speak or because others felt their behaviour was challenging.
It was good for me because I’m now a lot more confident, I’ve got a paid job as an Expert by Experience. Having a paid job is new for me as it is with a lot of people who have a learning difficulty. I have a voice and I was able to help other people living in these services to have a voice.
I hope things will change. All people who have a learning disability have the right to good safe services, choices and a good life.”
Huge lashes sweeping over her eyelids, face framed by diamante and skin shining gold, this is a photographic portrayal of how Samona Naomi Williams feels some days: valuable, not a burden to society.
Yet Samona, a wheelchair user who Ehlers-Danlos syndrome (EDS) type 3 which, amongst other things, affects her mobility, also has days where she feels trapped by her condition, vulnerable and delicate. Outwardly, on some days, she may show little sign of her disability. This is reflected in a portrait where she is bound to her chair with tape emblazoned with the word ‘fragile’.
Then there are times, she recalls, referring to a shot of her on a mattress strewn with medication, that her bed is a “marshmallow prison”: “There is no rest for me here. Yet I’m tied to it. I’m bound to it. There’s nothing sexy about being bed bound, though I wish to see it differently.”
Samona has turned her experience of disability into an art project, Bound, documenting her story with photographer friend Anthony David King. The pair recently exhibited the works at the Brick Gallery in east London and the pieces are available to view online at Saatchi with an exhibition tour of London planned for later this year.
Until her diagnosis in 2009, Samona was a TV, music video and film producer, producing and directing a short film screened at Cannes. With her condition, she felt she had “nothing to give”: “I was just this ‘disabled person’. I cannot write, I cannot do my films, I cannot work – that’s when Anthony and I sat down and had a discussion about what can I do to use to use my skills and illness. We came up with photographic project which we could make work around my disability.”
Anthony, who met Samona as a student, adds: “When she became ill, the impact on me as a friend, seeing her go through this…I could see she felt she didn’t have much to offer. We decided to do something together, an opportunity to do something not just for her but to tell her story that may be encouraging to others, looking at ways we could express her experiences.”
Samona’s condition means that everyday tasks – taking a shower or making a cup of tea – can be difficult. She uses a wheelchair when she goes out due to weakness, dizziness, a heart condition and pain when she walks. She often suffers fortnight long “crashes” where she remains in bed, exhausted and in pain. She describes these episodes as “being crushed by bricks”.
Yet the images are bold and provocative – Bed and Gold, for example, portray an attractive woman. Samona adds: “I may be sitting there [in bed or in the wheelchair], but in my head, I’m imagining something else, a feeling of fantasty. I was keen to get away from any stereotypical views that are out there; this is something that we don’t talk about – I’m still a woman…I know lot of people living with illness and we can infiltrate popular culture and can present beautiful images.
“Disability in the media is about benefit culture, it’s a negative thing, and also a lot of the time I feel people [without disabilities] cannot relate to disabled people, they have one of two reactions – they look away or they overcompensate. But we are just normal people who have an illness – it does not change you as person. I can’t get up every morning and do my hair but it doesn’t take away the desire to be who I am and who I was before. We all suffer from some kind of weakness and vulnerability; some wear it on the outside and some on the inside.”
The project, says Samona, also stemmed from a desire to draw attention to the lack of support for disabled people and how the current welfare reforms are a threat to vulnerable people.
Samona, who has home care, adds: “It is important, especially after the Paralympics, to keep attention on disability – not say ‘well, the Paralympics was a positive thing, and now let’s move on’…we are not miserable people who don’t want to work and who are in chairs and who are a burden on society.” She worries about the government cuts. “Of course they pick on the most vulnerable members of society, most disabled people are suffering.. it’s difficult to get out of bed some days, let alone write a letter to make a complaint. They kick you while you’re down.”
The artists stress that their exhibition portrays the the challenging side of Samona’s experience, but has a positive message. “The full set of images we shot try to keep a balance of reality – so the truth is that there are great moments and we tried to show that in images like Gold, Samona still has something to offer, still a valuable person,” says Anthony.
Samona explains the story behind the shots above: Gold:
“When I realised that I wasn’t going to recover easily, quickly or perhaps not at all from this illness, I didn’t know what to do. I had so many dreams and goals and suddenly it felt as if I would no longer be an asset to this world. I was going to be a burden. A burden to my family, a burden to society, incapable of contributing anything to anyone. I sat and contemplated this new existence, I felt completely worthless and couldn’t really see the point of carrying on, I may as well end it, I thought. However the caterpillar struggles through its cocoon before it can become a butterfly and a rock undergoes immense pressure before it becomes a diamond. I slowly began to see this illness as less of a torment and more of a metamorphosis, a struggle into something greater than I was before. I saw my worth in a different way. I could still contribute to my family and I still have so much to give to society. How? By allowing myself to be me regardless of this illness and realising that rather than being worthless, I am worth more than ever before. I am valuable. I can still shine and I will still go on.”
“I sometimes wish I were wearing this fragile warning tape when I go out in the wheelchair so that people would heed the signage and treat me delicately. Being in a wheelchair means you are exposed and on show and people often have reactions, judgments and lack consideration. They may see you as an inconvenience or worst still behave like they don’t see you in a clumsy and nervous fashion. In my case, people behave confused ‘what exactly is wrong with her’. I see their questioning and it feels almost accusing sometimes, ‘You’re not really disabled.’ ‘You don’t look ill’. Imagine how that makes me feel. The physical pain is enough but this is coupled with emotional pain whenever I go out. I feel the need to explain, ‘Hey, I might look ok but I’m suffering every day’. I am broken physically and mentally and I wish people would understand. It would be easier if I could just wear the tape.”
“I have found a new relationship with my bed. It’s like a marshmallow prison, necessary, uncomfortable, restricting and binding. It’s where I spend most of my time, in complete agony and pain. I feel restless, unable to sleep and too weak to stay awake. It’s a mind- numbing, agonizing, maddening experience being unable to move from the bed. Despite its billows of softness, feathered stage and relaxing countenance, it is not the pleasure pen that I wish it could be. There is no rest for me here. Yet I’m tied to it. I’m bound to it. There’s nothing sexy about being bed bound, though I wish to see it differently.”
“Decision-makers are cheaters, they suck..they don’t give a sh*t about us disabled”
“I don’t want to live in a group home, I don’t want to live in an institution”
“They make promises in Parliament and break them every day”
Not the words from a campaign against welfare cuts or disability rights, but lyrics from a Finnish punk band whose learning disabled members star in a new film and are about to embark on a UK tour.
The Punk Syndrome, already being shown in selected cinemas and out on DVD next month, is a documentary about the band Pertti Kurikka’s Name Day (see the trailer with subtitles at the end of this post).
The documentary by filmmakers Jukka Kärkkäinen and J-P Passi follows the members – Pertti Kurikka on guitar, Kari Aalto, vocals, Sami Helle on bass and drummer Toni Välitalo – as they record, fight, find love and gradual fame. Guitarist Pertti, who lends his name to the group, composes the music and writes the lyrics with vocalist Kari. The band members’ learning disabilities include Down’s syndrome and autism.
The film bills itself as painting a “frank, edgy and funny portrait of the individual band members” and you can believe the hype; this is one film that does what it says on the tin.
It is warm, refreshingly raw, poignant and laugh-out-loud funny. Watch out for some awkward issues around personal hygiene, a comically honest complaint from one musician to another that the music he’s writing is, well, a little too difficult to play, and an al fresco gig in a shopping area where the audience, pensioners included, is encouraged to “wave your hands in the air like you don’t give a f..”.
This isn’t a portrait of vulnerable people undergoing music therapy (although, even the band originated through music therapy workshops, does it matter if the end result brings their story and their experiences as adults with learning disabilities to light?) but charts the bust ups and the brotherly respect between the musicians (although there’s more of the former than the latter).
My favourite song? The one about one band member’s trip to the pedicurist, a regular event that inspires an angry song. On one level a darkly comic diatribe against yet another appointment that has to be kept, on another, a spitting rage against a lack of choice and control; being forced to do things you don’t really want to do at times when you don’t really want to do them.
The band was formed in 2009 in a workshop arranged by Lyhty, a non-profit organization that provides housing and education services. The group came together on punk fan Pertti’s name day [the tradition of celebrating the day associated with your given name] the band’s name was born. Pertti won the silver medal in the Nordic countries’ street organ championships in 2008.
As for Pertti’s fellow musicians, Kari is into motorcycles and has a girlfriend who he one days hopes to move in with. He hates group residential living, a sentiment he puts into his lyrics: “I live in a group home in Töölö, but I don’t like it because the area is too quiet. People in Kallio are nicer and there are record stores and bars.” As he says in the film: “Everyone has the right to make a decision about where and how they would like to live.”
Bass player Sami, a volunteer campaigner with the political party he supports, lives in the same group home as Kari. Toni lives with his parents who want him to move into group living, but he wants to stay at home.
Pertti, who describes touring as “terribly lovely” says he has been surprised “to see how many people dig us and say ‘Hey, that band plays damn well.’ We played a gig and they really liked our band.”
If anything, I’d have liked to have known more about their families, a bit more about the process that brought them together, but that would have been a different film. Cinematographer J-P Passi, has said of the documentary: “I hope that our film will show people that these people shouldn’t be though of as defective or inadequate, but rather as individual and complete human beings. I’d like the audience to see them as people who lack certain knowledge and skills but also lack the ability to act destructively against other people.”
To borrow Pertti’s words when he describes his band, this is one “kick-ass” documentary.
* The film is playing in selected venues, see the list of screenings here.
* If Pertti Kurikka’s Name Day and the film are of interest, then check out Stay Up Late, founded by the band Heavy Load. The Brighton charity brings disability arts to the mainstream and advocates for the rights of people to lead the lives they want to. Stay Up Late’s gig buddies scheme, for example, gets people with and without learning disabilities going to gigs together through a love of the same music. You can also check out this link to a documentary about Heavy Load.
Okay, so it isn’t yet December, but can you really look at this this frosty little fellow and fail to feel even a tiny bit festive? He’s just one artistic entry in the charity Netbuddy’s Christmas e-card competition
The charity, which runs an award-winning website and online community for parents, carers and learning disability professionals, invites people to vote via its Facebook site for the design they think should be its e-card for 2012, and the image on Netbuddy’s Facebook site withe most “likes”, wins. All the artwork has been created by children and people with learning disabilities.
The deadline for voting for the seasonal greeting e-card is 10 December and the winning artist will receive a chocolate hamper. Here are some of the other entries – click here to see them all and vote for your favourite:
“I quite clearly remember being tied to the cot sides,” recalls Florence, now in her 70s, of the childhood she spent in hospital. “Literally, two wrists tied to the cot sides with cotton tape so as I couldn’t get up and I couldn’t sit up because they – the doctors – had decided that if there’s something wrong with your back, you have to lie prone.”
Florence’s memories are among those featured in a project that encourages schools to create theatrical performances based on real stories of disability from people born in the 1940s, 60s and 80s. The Changing Lives, Changing Times project involved workshops at three Leeds schools over five weeks last summer and led to the development of teaching packs. These help teachers run awareness-raising workshops about disability and are being sent out to UK schools by the end of the year.
The drive coincides with Disability History Month, which starts today.
The rest of my piece in the Guardian’s social care pages is here, and I’m devoting the remainder of this post to extracts from the stories of Florence and Dan, both born in the 1940s, Poppy, born in the 1960s, and Holly, born in the 1980s, reflecting the contrasting experiences of disabled people in different eras.
Florence was born in the late 1940s, the daughter of a single parent, but when doctors diagnosed that she would never walk, her birth mother left her. Florence attended mainstream schools throughout the 1950s. She left school and entered her first paid job in the mid 1960s as a telephonist and clerk. Her second job was as a typist. Florence is a trained social worker. She is single, she has no children, she drives her own car:
“There were all sorts of problems of having a child that wasn’t going to be able to get do things normally. The children’s home really wasn’t ideal and they decided that they would foster me out because there were too many kids running about in the children’s home and because I wasn’t mobile I was getting picked on, getting hit, getting spat at by the other children.
I then went to foster parents who, although they knew that I wasn’t going to be able to walk, said: “Oh yeah, we’ll manage that fine”. And they didn’t, and after two months I was back in the children’s home. The children’s home said “no, we can’t cope with her here because she’s not mobile” so I went back into hospital, where I didn’t really need to be but because there was nowhere else suitable and they couldn’t find another foster placement, so that’s where I went.
My mother still was saying, “I don’t want anything to do with this child’, which was really difficult for her because any time that I needed any surgery or any intervention they had to get hold of her, and every time I needed something obviously it brought it back to her that I wasn’t living with her. So that must have been really difficult for her.
A relative of a child that was in the next bed to me for quite a while came in and after a couple of times coming in she realised that there wasn’t anybody visiting me, because nobody from the children’s home came, my mother didn’t come, so nobody came. So she said; “Well could I still continue to visit after my niece goes home?”. And they [hospital staff] said: “Yeah if you want to”. You know: Why would you want to do this? And she said: “I just seem to have got on with her and she’s got a really nice smile”. And so after a couple of visits she’d sort of said to the nursing staff “Is there anything else I can do?” And the nursing staff had obviously said, “Well, you know, it’d be nice if you maybe spoke to the social worker”, and so they set up an appointment with the social worker – and I ended up going out to them. Initially short-term fostering and then it turned out as adoption eventually. So that was really just luck and chance.
I had absolutely no idea where I was going because there was no proprietary work done – no photograph of the house, nothing. They didn’t do things like that then, they just assumed that a child would cope with it, you know. So we ended up at this house and there were like two steps at the front door. Although they knew I couldn’t walk it just didn’t register. I suppose because they felt I could stand up, I could walk, and the two are not at all related, but to people that have not known disability … why would you think about it?
I don’t think my adoptive brother was really consulted that much about it and I think he just took the attitude, “well, I’m an adult, it’ll not bother me”. And so, because there was such a big gap there really wasn’t a very close bonding at all and there still isn’t, but there is with his children, so that’s okay.
Apparently one day when we were in the town shopping … my adoptive mother saw my other, saw my natural mother coming in the door … … and we turned and walked away. Now I have not even got any memory of what my natural mother looks like. I have nothing.”
Dan, born in the 1940s:
“I can remember, I should imagine possibly 7 or 8, being in and out of hospital and, it was suggested by the medical profession that I should go to a special school, and I always remember it was a real big old type of building and we used to be taken on a… on a blue single decker bus and this school was um, it… it was more about doing this like making raffia baskets and playing with you know, clay and they… they had gardens at the back and used to let us potter about, digging things up or planting things, but it didn’t seem to be you know, really academic type of thing, it was all about… and I always thought I was the least disabled person there to be honest.
You were sort of cotton-woolled, you went in and there was always lots of people to help you, you know go to your classroom, help you if you needed it, sitting down, people brought things to you all the time to your desk or whatever, and um, it was… you knew you was different and you had this all the time, you knew that you were, you was different from anybody else, those outside, your friends at ordinary school, you needed this particular facility because you had a disability, and it was always the physical disability that was sort of, you know, important. That’s why I’m sure you know, it was as though you were limited, your mental capacity was limited.”
Poppy, born in the 1960s, went to residential special school at the age of four until she was 16. The school became her social world and she remembers feeling bored and lonely at home during the summer holidays. Her ability to move around independently was limited by an inaccessible environment. At school there was a strict institutional regime of normalisation including intensive physio and speech therapy (“the more dependent you were, the less privileges you got”) and there was corporal punishment for non-compliance and allegations of sexual abuse from some children: “I knew it wasn’t right, but there was no one to tell”. Poppy also saw changes towards a more enlightened attitude in the late 1970’s and whilst academic expectations for the pupils were not high she was able to gain enough basic qualifications to enrol at a further education college. Here is Poppy’s story:
“My first memory of school was crawling down the corridor after my mum and dad had gone, and I was in tears, because I didn’t really understand what was happening. I never walked, I was on the floor, I always crawled, so I crawled down the corridor. So the headmistress picked me up, shouted at me and put me on my feet. They had bars on the walls, and she said ‘we don’t crawl here, we walk’ and I had to walk and I’ll never forget that. It was pretty traumatic at the time.
The school was very institutionalised, and you got up at 7 every day, including weekends, which I wasn’t too happy about, and they had set meals, you had set bath times, set bed times, the day completely structured. Luckily we did have lessons, they did try to educate you, as much as they though was possible, but I still think we had a substandard education. It wasn’t very tasking.
I remember one child getting hit around the head, and I knew it wasn’t right, but I was too scared to tell anyone.
A new headmistress came, and she had very new ideas about disabled children, and I think she had higher expectations of us, and she taught us about classical music, how to appreciate the arts, I think we responded to that quite well. We would go to the theatre or we would go on days out to the Tate Gallery.
The aim was to get us as independent as possible, but not independent to use a wheelchair to get about; you must walk, you must talk. I had speech therapy, although you couldn’t tell now. I had speech therapy, and , I had physiotherapy, and we had to dress ourselves, we had to feed ourselves, and some people weren’t able to do that; the more dependent you were, the less privileges you got. So because I could get dressed on my own, I could sneak a few minutes in bed longer in the morning, I had more freedom, you know, I could do as much as anyone, I could come and go as I pleased.
I think young people have a lot of pressure today, I think it’s harder, I know one lad, he’s at a non-disabled school and he finds it really hard to kind of be part of the whole system, because he is different, he knows he is different and in some ways, his school mates treat him differently and he hates that. I didn’t get that at school, we were all the same.
College was like a right of passage. It was where I learnt to become who I am now. The way I learnt to become, I think, an independent adult, not in the sense of learning to walk, dress and all that stuff but to think for myself, to have the choices that I wanted, and to be able to make those choices. Also it made the selection process more powerful because you knew you’d been selected because of your intelligence, and not someone patting you on the head.
I majored in English and my minor was in Sociology and we studied ethnicity, racism, and sexism, and different kinds of religions and beliefs, and age discrimination and class, nothing about disability, so at that point I wasn’t even aware I had a political identity as a disabled person.”
Holly was born, several months prematurely, in the 1980s. She was not expected to live for more than a few days and doctors advised her parents not to bond with her. Her parents separated after her impairment was diagnosed, so Holly lived with her mother, who gave up her career, and a step-brother from a previous marriage. Her mother re- married. Holly was sent to a residential special school when she was two-years-old, and stayed there until she was 18. When she left school, at the age of 18, Holly also left home, partly because she had become more distant from her parents, and because she had experienced some domestic violence and abuse. She went to a mainstream college to study dance, but never finished due to back problems. Holly lives alone in a council flat. She works as a volunteer for a local disability organization and a charity that supports children who have been abused. Holly has aspirations to do a paid job and marry her boyfriend:
“Some people are completely ignorant, not through malice but they are ignorant when it comes to disability. Somebody’s already formed in their own head what a disability means and if you kind of break their train of thought about what a disability is, you kind of completely shock them.
I think it’s changing very, very slowly but I don’t think it’s changing at the pace that it should be. I think there’s still an awful lot of undertone, tokenism, you know, people still get patronised when they’ve got a disability. I actually find the worst people for it are teenage girls – like girls in between the ages of let’s say fifteen to early twenties. I don’t know whether it’s because you know, I don’t quite understand, but I’ve experienced really quite bad attitudes with that kind of age group.
I still find it absolutely disgusting that women that need to access places like women’s refuges are turned away on the basis of their disability. I think people are still like –what do you mean domestic violence? Well, you’re disabled. Because they either think that you – that you are completely spoilt and wrapped up in cotton wool as a child, and obviously you can’t experience domestic violence from a partner because disabled people don’t have sex. I find the – worst thing a parent can do is pull a child away when they want to know why that lady is in a wheelchair. I wish to god parents would just let their children ask. And then maybe we could start educating from that age.”