When I opened Instagram yesterday morning, I saw a post by Speech Dude. It was an answer to a comment along the lines of “what someone who needs 24/7 care contributes to society?” and Speech Dude’s answer was something like: “they make us slow down, reflect, and be better humans.”
I confess, it immediately robbed me the wrong way.
Don’t get me wrong, I agree with many things he said.
Rafael does make me slow down and be a better human. He often shows me the parts of myself I’d rather ignore and some unhelpful patterns like scheduling too much and then always stressing and rushing.
And I’m grateful for that.
But I also know this.
Rafael wants to contribute to society. He wants it badly and it’s on his mind daily. He doesn’t want to be a burden, he wants to be independent, to have a job and have a life.
He is still 8, so it’s too soon to say how much care he will need, if any, and how independent he will be as an adult.
What I can tell you for sure, there would simply be no way in the world for him *not to* need 24/7 care if we had followed the path outlined by health and education professionals.
The only reason he has a shot at a fulfilling independent life is because we pulled him out from public “education”.
The only reason he has a shot at a fulfilling independent life is because we took a shot at spelled communication, something that is not covered by insurance.
And now that he has a way to communicate, we work together to continuously improve his quality of life, his ability to be independent in a whole variety of ways, as well as his ability to make money.
None of that was supported by the “system”.
If we followed the path outlined by professionals, he would be in a segregated classroom with no education, working on “behaviors” that are in fact stress responses often to the very environment he is in. And heading for a group home once he outgrew the school system.
So while it is true that some disabled people need care 24/7 and we shouldn't value human life solely based on their monetary contribution…
…It is also true that in many ways we made it impossible for disabled people to make that monetary contribution by the very ableist system that we have in place.
And don’t even get me started on a 40 hour work week.
It is simply not sustainable for most people, not just those severely disabled.
If you have any sort of dependent, child or otherwise, it's not sustainable.
If you have any sort of disability and you need more time to rest and take care of your body, it's not sustainable.
These two categories of people alone can easily cover close to 50% of the population.
Yet, a 40-Hour work week is the only way to get meaningful health insurance and other benefits, not to mention actual career growth.
How does this make sense?
How do we still have a system that was created on the foundation that the only lives that truly matter are those of white able-bodied men and everyone else is frankly disposable?
Of course it does not allow for any contributions from disabled people! Regardless of their level of disability or frankly brilliance they quietly possess.
Cause in those times pretty much anyone with any body difference was sent straight to the asylum.
So while it’s all nice and well to support someone because they make us better human and all…
I think there is a great hypocrisy in first stripping someone of opportunity and then feeling good as we support their mere survival.
ANYONE DESERVES AN OPPORTUNITY TO LEARN AND CONTRIBUTE REGARDLESS OF ABILITY OR DISABILITY.
IF MY BODY DOESN’T WORK THE WAY YOURS DOES, THAT MEANS NOTHING ABOUT HOW MY MIND OPERATES AND IN TODAY’S WORLD OF MACHINE AND TECHNOLOGY MIND MATTERS SO MUCH MORE.
P.S. This is in no way against Speech Dude. I do believe we, as a society, need to value a person beyond their pure monetary contribution.
Just in doing so we should not forget to dismantle the very real barriers society put in place for those who can and want to contribute despite their disability.
P.P.S. Rafael and I are committed to doing exactly that through Spelling the Tea on Autism, to share lived experience of non-speakers, promote robust spelled communication and advocate for more inclusive opportunities. If this work matters to you, consider becoming a paid subscriber.
People really need to understand that! Thank you from a level 2 autistic