Friday, April 26, 2019

All of us means ALL of us

   I recently went to a talk sponsored by a student group at the colleges here.  Two things struck me when I saw the event listed.  One was that there is a disabled student group at the Claremont Colleges, which, at least in my mind, have not been known for being disability-friendly (although I have seen more ramps, automatic doors and the like installed in recent years – perhaps spurred on when a guy in a wheelchair I know sued one of the colleges the day after he graduated for being inaccessible).
   The other thing that struck me was the name of the group: the Disability Illness Difference Alliance. 
   Really?  Why is illness in there?  Haven’t I finally sloughed off the illness title, deciding that that I can stay up in my chair and that I wasn’t sick after two years of spending much of my days in bed? As I stated in a recent post, I was sick of being sick.  What’s more, isn’t the problem with being disabled is that we are seen and treated as sick, ill. What is “invalid” pronounced differently? 
   And “difference?” Come on! They might as well said “special” or “differently able” or – remember this, anyone? – “handicapable.” This group had some catching up to do.
   But maybe it’s me who needs some catching up, some shaking up in regards to the disabled and where they are or should be in society.  The talk by Lydia Brown turned out to be a much-needed reminder, if not an eye-opener, for me. 
   Ms.  Brown is a disability activist and a lawyer in Maryland who has autism.  That was a wake-up right there.  I was expecting her to be in a wheelchair or to maybe be deaf or blind.  I was expecting her to have a more obvious, physical disability (I also thought it was odd that I was the only person in a wheelchair in the room).
   In her remarks, Ms. Brown focused on disability justice, pointing out that it is different from disability rights.  Whereas disability rights is about getting laws regarding access and accommodations enacted and enforced, disability justice is about getting people with disabilities seen as equal and included as such.  Disability rights opens doors; disability justice opens minds and maybe hearts.   
   The disabled aren’t regarded as equals and are often not included and have to fight to be or make a point of being included. As Ms.  Brown pointed out, the disabled are guilty too of having this mindset, seeing the disabled or those with other disabilities as not being equal and then not including them.  I did it when I thought it odd that Ms.  Brown didn’t have a physical disability.  I do it, much to my shame, when I see people who are mentally disability and am embarrassed and think, “I’m not like them.  I’m not one of them!”
   I do this, because people often mistakenly think or assume that I’m mentally disabled, and I have to fight to show that I’m not.  I also do it because I would hate to be like that. 
   I was reflecting later on how, yes, this is what we do when people are sick.  Not only do we not want to be like them – sick – we tend to forget them, go on with our lives, leaving them behind until they get well and catch up with us. Much of this is due to not feeling well, not wanting germs to spread, etc., but there is still a psychological impact, both on those who are sick and those who are not sick. Illness is not only a bad thing, something to be avoided, something to be eradicated; it is something to be ashamed, if not guilty of.  Before two years ago, when I was far less disabled and more active, I particularly hated being sick, not just because I felt crummy but also because I was not active and felt more disabled and also forgotten, left behind, not a part of the world, much less the community.
   And, yes, this is often how I feel as a disabled person – forgotten, left behind – but the difference is I feel well, well enough to want to be part of the world, part of the community, and well enough to make noise and raise a stink, to request or demand that there be a ramp and that I can be a part. But it does get awfully tiring having to constantly raise a stink.  And what about those who can’t speak up to be a part of the world, part of or simply out in the community in whatever way they can. 
   Who am I – who are we – to think that they don’t?


  1. thank you John, for writing this about those that can't even though they want to, or how you eloquently wrote, who are we to think they don't.
    I wanted to say this strikes home to me because the label of disability is a disability all its own. Don't we need more inclusion especially in today's political and social climate.

  2. Wow! Great! Spitting nails and clear as a bell! Thank you for knowing so much and saying it so well. You're a good teacher and a good seeker.

  3. there is a reason why you were there and why you are where you are... perhaps to raise many stinks. yes, I know it gets tiring but you'll leave a mark on your community, society and the world... it is and will be your legacy. and we love you for it (and should be working for the same justice and rights).