Disability means something.
I know that.
For me, it means that it takes more effort to get around, that there are barriers in accessing everyday life, that planning and preparation are a huge part of every decision. It means those things. It means more than that too. It means that discrimination is a daily experience. This store has narrow doors, that church has stairs, the place across the street has installed a ramp that is steep and dangerous. It means that people will notice me but not see me, that conversations will happen around me, that 'the' often becomes my first name and 'chair' my last. I know that.
I have to keep remembering what my disability doesn't mean.
It doesn't mean that 'second class status' is acceptable.
It doesn't mean that asking for access is asking too much.
It doesn't mean that speaking into conversations about me is rude.
It doesn't mean that my participation is a favour granted by another.
It doesn't mean that my voice is extraneous.
No it doesn't.
They used to call people like me an 'invalid' ... now, instead, I'm often treated as if ...
my rights are invalid
my needs are invalid
my voice is invalid
or that
I am invalid.
I have to remember that.
I have to tell myself over and over again.
I need to validate myself in moments when I'm told that my concerns are invalid, my experiences are invalid, that my expectations are invalid.
Disability means something.
It does.
But what it doesn't mean is more important.
"It doesn't mean that my participation is a favour granted by another."
ReplyDeleteBut it often feels like that to me.
Thank you for reminding me that others often feel like this too. And that I am not invalid. Or without value...
Julia
Your post is certainly timely; because my son and I are strongly getting the message that we're not important, and what is happening is irrelevant.
ReplyDeleteAnd, instead of helping with the things we need help with (and have asked help for), instead of addressing the need, they're now making the whole situation a child protection issue, when, the main problems have to do with the system (lack of support, accountability, training, etc. for personnel working with my son). And, because of my own disability, I need some physical assistance to do some things ... and I've been asking for months and months.
Thanks for reminding us we all have similar situations, and that we need to validate ourselves.
I know with regards to child abuse and neglect ... because of my son's disability, and maybe because of mine too, the professionals with a duty to address the matter is making light of it, and is disregarding it - because it is in the past - but, the abuse and neglect is ever real to my son today ... even right now after 2 in the morning, I can tell he's upset still, as his tic is really present. It's hard to validate yourself; when such people as the Ombudsman, who is supposed to hold gov't dept.'s responsible, will not even follow their own legislated act ...
so, your post is timely, for sure ... going to go speak with Andrew to speak some positive affirmations to him ... and validate him .... thanks Dave, Joe, Julia and everyone else. :)
Elizabeth & Andrew
interesting. here is whats on my mind today. why do people with disabilities have to "prove" they are disabled enough to get what they need or deserve, like a moment or two extra to get on a plane without being trampled or holding up traffic. like using a handicapped parking space while everyone looks at you and thinks you dont deserve it because you dont appear at first disabled. I am not disabled. My kids are. and while no one outwardly has said anything to me, I find that because they are young people assume I am just lazy. like I just dont want to carry my kid to row 39 on a plane. like I just dont want to carry my kid to the store. sometimes a stroller is more appropriate for the outing than the w.c. but without that chair there is no disability, you are just lazy.
ReplyDeleteI am glad for this post, though the last line is a more a future worth fighting for than a reality in law, in society, in interaction.
ReplyDeleteA conversation with a person on the RN practical courses followed:
'Oh, I don't get to work with people yet, I've just started with the mental retards, then I get the oldies, before I get to work on a real person.'
On how these courses can exploit vulnerable disabled individuals.
'It isn't exploiting if they are happy to see me.'
I find the most 'invalid' is the loss of individual identity, but rather 'an invalid', 'a wheelie'. We need to own the terms, the organizations and the priorities to redefine. Because even Michael J. Fox is 'The actor with parkinsons', or 'that disabled actor' not, 'The lawyer on The Good Wife'.
I think he is just an actor, and you are a writer. But is every post you make 'that gay disabled post' in society? When do we get ownership of our identity? Until then, I fear we will be 'invalid'.