MY wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure, but ACCEPTANCE……..93% of people won’t copy and paste this, WILL YOU be one of the 7% that does and make this your status for at least an hour! They do not want to be “fixed” they want to participate in the world to the best of THEIR ability!
~ The status on a number of my friends’ Facebook profiles this week
Excuse me, folks?
Is this thing on?
I … um … may I have … um … excuse me – you in the back, may I have your attention for just a second please?
Folks, I really, really appreciate what you’re trying to do. Really, I do. I don’t doubt that your intentions are pure and that down to the very soles of your feet you mean well by cutting and pasting this into your status. And I really, really don’t want to be that oversensitive shrew who shows up and makes everybody feel like crap about trying to do some good in the world. I swear, I don’t. But I have to be honest, this stuff scares me. As innocuous as it may seem, I think it’s irresponsible at best and downright dangerous at worst.
With all due respect, how on God’s green earth do you know what ‘children with disabilities” want? Have you asked them? ALL of them?
Disabilities are a broad category, folks. When we say disability, what are we throwing in there? Dyslexia? Non verbal learning disorder? Blindness? Deafness? Autism? Cerebral Palsy? Friedreich’s Ataxia? Epilepsy? Mitochondrial Disease? Cystic Fibrosis? SMA?
I know an adult or a child with every one of them, and well – many of them have made it pretty clear that they’d love to be ‘fixed.’ Getting out of a wheelchair? Living past their life expectancy of 26? Swallowing their own saliva without suction? Um, yeah, a cure would be just fine, thanks.
Now I’m not claiming that everyone wants a cure. I can’t speak for everyone which is precisely what I’m hoping we can all take away from this little exercise. The community that I know best – the autism community – is fiercely and in many cases bitterly divided by this concept.
To dramatically over-simplify the debate for those of you in the cheap seats – some fight for a cure for the often crippling challenges of autism while others believe that it is an integral part of who they (or their children) are and that the ‘real fight’ should be to win understanding and acceptance from the community at large. I know someone will get upset with my broad strokes on this, but if I delve much deeper this will no longer be a post; it will be a book, so please save the hate mail.
I have come to rest smack in the middle ground. Over time I have come to a place where I believe that autism is indeed an integral part of who my daughter is. I can no longer wrap my brain around the idea of surgically extracting it from her being without taking away some of the very essence of who she is. At the same time I work constantly to mitigate her challenges and as you well know, it kills me to see her struggle. If given the option of ‘curing’ her now, I have no idea what I would do. None.
But there are plenty of people in the community who know exactly what they would do. They would grab a cure with both hands and never look back. Most are parents who work day and night to find a cure for their children – many of whom struggle with the most basic of human functions. Many don’t speak. Many have no form of communication at all. Many are in constant peril as they wander off or bolt into traffic with no awareness of danger. Many are heartbreakingly vulnerable. How could I possibly make a judgement for them? How could I tell them what they want or don’t want? How could I possibly tell them what they should or should not fight for? And so, while I may not choose a cure for my child, I will stand by my brothers and sisters in the fight for their right to choose one for theirs. Our children deserve the choice.
In many cases, passion has given way to anger and anger to blindness. I’ve seen people say horrible things to one another in the heat of the moment. It’s easy to get swept up in the madness, but I’ll say it until I’m blue in the face – we can’t ask the world to exercise compassion to our kids if we can’t even manage to show it to those within our own community.
Oops, I’ve apparently gone off on a tangent here. Apologies. I’m back now. Shaking it off – back to the Facebook status problem.
When we start to spread the word that ‘children with disabilities are not looking for a cure’ we begin to make it OK to stop looking for one. Why the hell would we spend vast sums on research into answers that according to the status – nobody wants? If the kids with the disabilities don’t want a cure, why would anyone help to fund the studies that are searching for it? It’s a dangerous, dangerous road.
Acceptance – YES. Absolutely, positively. Acceptance is vital. I will never stop fighting for awareness, acceptance, understanding and compassion. My child needs them to survive in a world that is so often hostile to her very being. And whether or not she chooses someday to take a cure, others will certainly make the choice not to.
But working toward acceptance and cure do not have to be mutually exclusive. While we work to get a child out of a wheelchair, we must also work to make the world accessible to him while he’s in it. Ramps and research are equally necessary. Hell, some of the most important research might well be done by those who need a ramp to get into the lab.
So please, stop and think before you post a sweeping generalization. These are thorny, complicated, emotionally charged issues that just don’t lend themselves well to one size fits all pass it on to everyone you know status updates.
But thank you for doing it anyway. Thank you, because I know that you meant well and I love you for it.