There’s very little attention shone on the effects on families of dealing with learning and/or physically disabled people. This is probably going to start off seeming selfish, but if you’ll bear with me I hope you’ll realise that it comes from precisely the opposite sentiment.
My personal viewpoint is one of a sibling – my adult sister was born disabled. As a result of decades of support and the good work put in by many people, she is now capable of some independence and eagerly contributes to society – within her limits and with careful oversight. She genuinely wants to live as full a life as she can. She doesn’t want to be a passenger.
Here comes the selfish bit. I’ve had to alter my life choices as my relatives have aged and died, since I could no more throw my sister out of a car into a remote country ditch than cut off my own arm. Nor would my parents have ever done that. Later in life, my mother confided in me that she used to feel like telling me “just run, get away from this”. She didn’t and she knew I wouldn’t have done it anyway. It was just expressed in the spirit of honesty between us.
I understand completely those who can’t cope and walk away, and I make no judgement whatsoever. I also have great sympathy for those who don’t have the resources and patience to navigate the complexities of the care system. If you dread filling out a tax return (and who doesn’t), try this stuff sometime… And I completely sympathise with those who simply don’t want to make waves for fear of prejudicing the care of their loved ones.
Siblings of disabled people, in my experience, are psychologically shaped by often damagingly early parentalisation. You are, to some degree, a parent from the age of about four, and it’s formative on your personality in many ways – some of them positive. But there’s all the sense of guilt, responsibility and burden that goes with being a parent. And pride in achievements, of course. You grow up with that, from the first moment your child brain is capable of comprehending that someone else is really just the same as you. We’re all just experiencing the world from the confines of our flesh cages.
But for a roll of the dice, it could have been you. As you grow up, the notion that this is the way things are and it’s nobody’s fault takes quite some emotional effort to handle. At some point, it’s inevitable that you’ll come into contact with others who have the same sort of difficulties as your family member, and you just can’t help but feel empathy for them. It becomes more than a personal issue and that’s where the selfishness resolves into something else. You get involved.
Interesting that so many people working in care giving have family members who require it. It’s not because they’re trying to get into the system, it’s just awareness. Also interesting that parents and guardians tend to get together informally and offer support to each other.
But remember – behind every disabled person is a partially disabled family, and everyone is trying to do their best. That is of course, if there is a family.
Families are always complex – your “normal” brother may be thick or your “normal” sister may be lazy, but this is a level beyond that. However thick or lazy they may be, they don’t need assistance just to function. Disabled people, in my experience, don’t want to have to need help, but must somehow reconcile themselves in their own way to the fact that they do. And those around them have to find a way of giving them that help in the right way. For instance, someone in a wheelchair is just someone like you, only sitting down. That’s all.
I don’t wish to politicise this specifically – it’s very complex. Nor do I wish for a “here state, catch” approach. No begging for handouts, this isn’t what this is about. And I’m not complaining, I’m explaining. My thinking is purely practical (it comes with the territory).
The care of learning and physically disabled people involves a great many governmental and charity organisations.
So if any of this has chimed with you, whether personally or otherwise, I’d ask a few things of you when you may have the time. Get involved in the debate and share your experiences and concerns. Lobby your council and MP so that policy and care provision on the ground can be properly addressed. Donate a few bob to CASCAIDr, which has helped our family, when you can. Or just take a couple of minutes out of your day with someone, when you can.
We are all of us on a complex sliding scale – with a totally arbitrary definition of “normal” – somewhere on the line. We all have our strengths and weaknesses, and we all need help sometimes. And of course, inside our own heads, we’re all “normal”, aren’t we?