The heartbreak of sending our disabled child to residential school
Lacking support, we have no choice but to send our daughter away for schooling, but stories of institutional abuse haunt me
The horror and revulsion of watching the abuse meted out to patients at the private hospital Winterbourne View was a far more visceral experience for me than for Panorama viewers last year who don’t have a family member with a learning disability. The pain was far deeper because I felt like I was watching my daughter’s future being played in front of me.
Emily is 15 now and her inner torment of the hormonal battle of adolescence, which screams out for her to detach, is coupled with her neurology of autism and learning disability that limits that detachment.
So she suffers her torment as best she can and attempts self-restraint because she’s a person of decency and inherent kindness. She’s just a teenager. How much easier for her if she could tell me to fuck off, but she can’t.
For the last three years, we have found ourselves increasingly under attack. Physically and mentally we are broken. Whereas a neurotypical teenager might shout abuse and stamp off to be with their understanding, equally parent-hating friends, Emily has no outlet other than her fists.
Added to that, in the last 18 months she has refused school and respite. She spends all day in her nightie and her anxieties are managed by controlling her environment completely. It’s what you do when you’re frightened. Gone are the days when I could pick her up as a protesting toddler and take her where she does not wish to go.
Last year I sustained a broken coccyx and last month a broken finger. So now we face the thing we fear the most. The thing that has kept me awake for two weeks and gave me nightmares and other sleepless nights in the 12 years since diagnosis. We’re sending Emily to a residential school.
As Mencap and the Challenging Behaviour Foundation issued their report today, I read it and I knew that the “them” in the report was us. As lovely as the residential school is, it’s still deemed to be an institution by their descriptions. I support the report and it’s call for action to close large institutions and develop appropriate local services 100%, but this is the only choice families such as ours have.
We have few extended family members, no social network, no resources, no more strength and no hope left. Sooner or later I will be seriously injured. Emily will have enough awareness to know that she was the cause and will have to live with that long after her teenage anger leaves her. Her memory is phenomenal.
Politicians so quick to arrive for their photo opportunities with children such as mine are equally quick to turn away from the same families when we need them most. It is as ever a matter of cost over value. I know that hate crime against disabled people is a fact of life. From verbal abuse on the streets to murder of vulnerable people, it’s happening more and more.
On Twitter this morning, a comment was made about the cost to the taxpayer of care for children like mine. What about the value of decent provision in the quality of life it offers? When did that become an inconvenient truth? With families separated by hundreds of miles, of course abuse flourishes by those with cruel intentions.
The detailed reporting of institutionalised abuse may torment people like me, but the solution can only be found when learning disabled people are valued as equal members of society. Not pity figures, nor punchbags but human beings with hopes and dreams and the right to be listened to and heard.
When we allow bullies in the media, in comedy, in education, in tabloid papers and in the heart of government to make disabled people the “untouchable others” undeserving of a seat at our dinner tables, let alone in our policy framed to support them, we enable the bigots. With every apathetic turn of the head we permit the scum behind closed doors to advance on human vulnerability and make them into a “torture toy” for their own amusement.
Cruelty isn’t preventable, but becoming a society that refuses to tolerate the spectrum of discrimination, from hate speech to hate crime, is entirely achievable. It just takes effort. Encompassing disability in current hate speech laws as a crime in and of itself would be a start.
I’m spending the days while we wait to see if our local council will permit our choice of residential school, trying not to think of Winterbourne View.
My nights are spent thinking of nothing else.
The school is local, expensive and expert, and the students thrive. It’s everything we could hope for our girl. It comes highly recommended. Intellectually it’s a straightforward decision, but the heartbreak of letting go feels like giving up and the fear, which stalks my mind, is unrelenting.
http://www.guardian.co.uk/commentisfree/2012
