Saturday 1 May 2010

BADD 2010: Building Bridges

We all know how we feel about being disabled, right? And how it feels to be on the receiving end of disablism. But what happens when we encounter people with whom we both share so much and understand so little?
I met up with two friends recently who have a young son with a learning disability. And their experiences opened my eyes to my own views about being disabled and left me with all sorts of questions.
The thing we most definitely agreed on was how dealing with disability on a daily basis would be a whole lot easier were it not for ‘other people’. As my friend observed: “What I hate most of all is the pity factor. The looks. The crass remarks like: “Oh what a shame,” which I find a truly awful way of looking at my son’s life.”
I got a sense that both of them were thoroughly worn down by the reactions of those around them, which had led to a magnification of very complex feelings around their two-year-old having a disability. I could see that even as they loved and accepted their child, other people kept messing it up for them.
As Lily Allen (and countless before her) said: “It’s not me, it’s everybody else,” and this is perhaps never more true than when you are disabled and on the receiving end of at best ill-conceived notions and at worst downright prejudice.
We sat in a sunny park and swapped stories about being ostracised, rejected and misunderstood as my son took their son off for a walk on the grass. Oh to be a kid and just get on with getting on, as my son seemed able to do with effortless ease. Meanwhile, whilst it was good to talk, I found I was checking myself before speaking, and very heightened to the possibility that I may at any point make an enormous gaffe.
Because whilst I am 100 per cent conversant with my own condition and the experience of being an adult with a disability, I am not the parent of a child with a learning disability. I have no idea what it feels like to be ignored by other mums and dads because my child is ‘different’ (though I can have a guess) or pitied by friends and family. I don’t do the pity thing myself when encountering anyone with a disability. I also understand the additional emotional exhaustion that comes with fending off the tide of crap that society dumps on people with disabilities in a myriad of small ways each and every day. But I have no idea how it feels to be a mother, or a father, burning with anger for a child we so desperately love and want people to understand and accept.
“I feel I have to advocate for him. All the time.” My friend said. And I felt sad that she wasn’t really getting the chance to just go out there and be a Mum, doing Mum things with other Mums because the other Mums have rejected them both.
And I found myself talking too much, taking refuge in my well-formed social model observations and perhaps pontificating a little. It was comfortable ground, more comfortable than asking about their son, asking what he likes or doesn’t like, what makes him laugh or, well, really anything that would help me ‘relate’ and not cause offence, like so many other people do with their thoughtless actions.
He doesn’t speak, so he gets ignored. He is developmentally delayed so he doesn’t run about with kids his age. I was aghast at my own lack of imagination, sitting there in the park on a sunny day and feeling totally inadequate. And what shocked me the most was my realisation that just because I have a disability it doesn’t by any stretch of the imagination make me able to ‘cope’ with someone else’s. The common ground was in being reminded of how very angry I was for the first couple of years of being disabled myself. I saw their exhaustion and defiance and totally related. And in seeing it in someone else, a warning bell sounded.
Exhaustion and defiance are understandable reactions, but could the anger, the chippiness be a little counterproductive? It’s easy to see how after constant rejections at playgroup, in cafes, in the park, at family events even, the resentment would set in.
But, and I was so totally reminded of myself in this, the disablism radar can malfunction as a result. If we are too primed for bad reactions, are we at risk of putting people in the dock before they’ve committed an offence?
True, I felt I didn’t cope brilliantly with meeting their son for the first time and I beat myself up afterwards about not making any sort of meaningful connection with him. And my retrospective thinking became little non-disabled for a second as I chewed it over. “Why should I know how to react? Did they do anything to make the situation easier? I was never great with small kids anyway...”
Gah! I couldn’t believe I was thinking this way. But I was. And it also struck me that just as I was trying to get a measure of the situation, I had potentially been quietly sized up myself. My ‘disability credentials’ were not in question. But my first, and very important, reaction to their son most definitely was. And knowing they were potentially sitting back with their arms folded thinking “Well, let’s see what she does...” I felt the most able-bodied I had for years. Inadequate, slightly uncomfortable, and desperately trying not to say the wrong thing.
And for a lot of people out there who are not disabled, this is what it all boils down to. I’m not saying that ill-treatment and prejudice don’t exist...just that lesser forms of disablism that we could potentially help with are out there. Of course any sort of discomfort with disability needs to be addressed. But perhaps if we could go into more exchanges in the spirit of sharing information and fostering understanding, we would achieve more than we ever will by getting angry and defensive. God knows, it’s taken me years to get rid of the chip on my shoulder. Realising that some people will never understand, some can be helped to understand, and some positively want to understand ultimately means that you don’t stay angry with everyone. And it also means you can focus your energy on people who can, and most probably will, make a difference.


Adelaide Dupont said...

It is a big realisation: that just because you have a disability (whether born of it or of recent date) you might not be able to imagine or cope with somebody else's.

I often beat myself up about not making connections too.

And, yes, I can see also how "not being great with small kids" is not only a personal weakness [!] but a reflection of ablism.

And people move between those groups all the time. (the three which you mentioned at the end).

Cusp said...'re back and what a great piece of writing to be back with.

As the parent of a child with learning disabilities and who is also visually impaired I recognise all you say. Our son's a teenager now but ceratinly when he was small we did encounter some of the situations you mention and sometimes we enountered rudeness, ignorance or plain and simple stupid questions e.g. when he was very small and wore specs;
'Does he need to wear those glasses? '
'Oh no, of course not. We just do it as a joke so everyone stares at him ' NOT !

My attitude has always been (and I hope we've passed it on to our son fact I'm sure we have) that he has as much right to do something or be somewhere as anyone else and if he looks different in the way he does it or says it then it's everyone else's probem and not his. I will make no apologies for my child and his way of being inthe world -- anymore than I apologise for myself. I am as I am and if you don't like it than it's your loss.

Wheelchair Dancer said...

Yes, yes. I have screwed up in similar ways, too. And it is truly awful. But each time I do it, I learn a little.

But thank you for writing this.


Ruth said...

This is a great addition to BADD.

It took me a long time to realize that there are some people who are "incorrigibles" and not to waste energy on them that could be better spent on others.

Becky Andrews said...

Well put and has me pausing at my post. I plan to do a follow-up on all the incredible experiences with others.

Anonymous said...

That rule of thirds works with lots of groups - has helped me focus my efforts, too. Agreeing with others - an excellent post with a good story to lead into conclusive wisdom. Esp that part about wasted energy in anger and defensiveness.

Ellen Seidman said...

Hello. What an eye-opening, well-said post. You make similar points to mine. Thank you for helping to spread the good word!

Stephanie said...

I don't know the people in question, but I've found (after years of being the parent of multiple children with autism) that it's pretty easy to forgive the gaffes of those who genuinely care. There can always be a "next time" if you're ready to say, "You know, I don't think I handled that well. What can I do better next time?"

But ask during a low pressure moment. If you ask in the heat of things (and the people you ask are anything like me) the response you'll likely get is "We're fine. We can handle this." In the heat of the moment teaching someone else how to help requires more energy and effort than I have to spare.

There are people in my life who started out saying "That must be so hard" and now go out of their way to do things that really help. The difference is talking about what helps at a time when no help is needed. At least for me.

Oh that, and not talking about the child as if the child isn't there when he or she is right there.

Anonymous said...

I love the honesty in this post! I just had this conversation with a person with a certain issue who was in conflict because she felt impatient with someone who needed a lot of accomodations, as does she-same diagnosis. Interesting issue- I feel very guilty when I can relate to my own childs issues but feel uncomfortable with others differences. Sigh....very complex issue-too late at night :)

seahorse said...

Thanks all, bit tired after a bout of flu so can't respond individually but it means a lot that you've read my post and thought and commented. I'm glad I wrote it.