2 Disabled by association
In Session 1, Cian, Charlene and Terry talked about a sense of exclusion they felt from society.
Do families share this sense of not really belonging that people with learning disabilities talked about?
Activity 2 Disabled by association
Timing: Allow about 10 minutes
Watch the video below. You may remember some of this content from Session 1. What do you understand the term ‘disabled by association’ to mean?
Download this video clip.Video player: Video 3
Transcript: Video 3
MARGARET
I came from the Caribbean. I was born in the Caribbean. I came here very young. And I had Marvin. When he was born, everything seemed OK.
And later on, he wasn't reaching the milestone which I thought he would've done. And I approached the health visitor and they said, no problem, some kids are slower than others. And they started doing more investigation, like speech therapy and stuff like that. At that time, he was about four years old, coming up to four. So all this time, I've been shunted from pillar to post, not knowing what's wrong with him.
And eventually, we went to Great Ormond Street. One of these doctors said that he was autistic. It was a real struggle. It was very stressful for myself. At that time, his dad, frustrated with his problem-- having a child like that-- is gone. So I'm a single parent then. We all have this problem. The partners always-- the other way.
My son is 35. And at 35 he'd probably be a married person by now. But because he is disabled, he is still like a child. He couldn't handle anything. Any correspondence, money, he can handle that. So he's totally dependent on someone. Now, I was that person who did everything for him.
And he's gone somewhere else. And someone else, you're not sure the other person is doing the same thing. It's like a job for them. So they do what they can and they're off home. For the rest of his life, when I'm gone, he'll still have to have someone to be dependent on.
NIROO
Bhavin is 26 years old. He's been living at home until last December. He has autism, epilepsy, and behaviour that challenges.
JIGNESH
One of first memories I have of Bhavin, I remember seeing him as a baby and thinking, I'm looking forward to seeing him grow up and to develop into the person that I am. Unfortunately, I wasn't going to discover how he was going to learn to speak and how to understand other people and the natural development the average individual takes.
NIROO
We're disabled by association. Because wherever you go, they look at you. We felt we were not part of the community.
JIGNESH
There's many things I would see a lot of my friends and their families doing, which actually we as family could never do. Very rarely did we ever go away as a family together.
NIROO
Sometimes he can be very aggressive. He can be very aggressive. He's agitated. And he has obsessions with papers, flowers, his collection of key rings. And if he can't get it, if we don't allow him, then Mommy gets a kick. It backfires.
He's never far from the mind. Every waking moment we think of Bhavin. What would he be doing now, quarter to 7, if he was at home and having his supper? He's always there on my mind. He's always there.
He's going to be moving into his own one-bedroom flat. My hopes for him is that he'll be stretched to gain more independence and be his own person. Do what he likes and do what he enjoys without Mum restricting him.
JIGNESH
He will be learning those life skills. And that will hopefully help him to live a bit more independently, which is our long-term hopes. What matters to us is that someone like Bhavin isn't just part of some long, elaborate babysitting service that's government-funded but actually he's treated as a human being and as a person, and what he likes and who he is is respected and understood by those people that are looking after him.
Video 3
Interactive feature not available in single page view (see it in standard view).
Interactive feature not available in single page view (see it in standard view).
Answer
The reason parents and siblings can feel excluded is because of a fear about what other people think about their disabled relative, and also how others will react.
According to Bhavin’s mum, Niroo, they are ‘disabled by association because wherever you go they look at you, you know’.
According to Jignesh, Bhavin’s brother: ‘There were many things I would see a lot of my friends and their families doing which actually we as a family could never do. Very rarely could we go away as a family together.’