I am sometimes asked, with a bit of hostility mixed with pure disbelief, how I can write a blog every day regarding my experiences as a disabled man. This usually happens whens speaking to someone who also has a little bit of trouble believing my stories about the hostilities and prejudices I face from being different and disabled in the world. Accusations of being 'over sensitive' and 'hyper critical' regarding people who mean well and who have no ill intent in their interactions with me. Then, after informing me that disabled people suffer generosity spurred by compassion rather than prejudice spurred by hatred, I am dismissed.
Similarly, when lecturing, particularly about attitudes, actions and prejudices that people with intellectual disabilities face, I often face people who would really, deeply rather that what I was saying wasn't true. In order to facilitate that, I meet the same kind of accusation, I'm exaggerating to make a point. It's been suggested that my own disability has made me less able to be an accurate observer of such things. (Really!?)
In both situations, I am not speaking of MOST people, either readers here or those who attend my lectures. I am speaking of SOME people. Most get it because most see it themselves.
Well, then, sometimes when I lecture there is another person with a disability in the room. This is always wonderful. Like the other day in California, I saw a woman with a disability, using a wheelchair like mine, but hers was way cooler, roll in. She became my 'rock' for the presentation. I'd look back at her after describing something of the disability experience and she'd be giving me the thumbs up or nodding in that knowing manner. It's the kind of reassurance that you need now and then.
It's not just me.
I'm not what I'm accused of being ... and over sensitive, hyper critical poor observer of my own life.
I share these experiences with others.
At break she came to speak with me, Robin, she has given me permission to use her name, and I had a great chat as we shared experiences and just communed disabled person to disabled person. We had a conversation that could ONLY be had between two people with disabilities. She gave me the gift of confirmation and of true understanding.
It's not just me.
We people with disabilities have something to say about our lives.
I'm privileged to have an audience, mostly of willing listeners and willing readers - but for those who think I go to far and overstate the case, knock on the door of another person with a disability and have a chat. I'm not alone in this. Robin reminded me of that.
This is one of the things I find particularly difficult about my chronic illness. It does cause some cognitive function problems like word finding and sentence structure issues (generally only when speaking, typing is fine!). I also feel sad and upset sometimes about being newly physically disabled, and the impact using a wheelchair, being in pain etc is having on the life I thought I'd be having at age 35.
ReplyDeleteThe problem is you become an unreliable witness to your own experience. I tell my husband that a person gave me a look of disgust and inspected my body because I'm in a wheelchair but neurological problems don't make you 'look' sick. But he finds it really hard to believe that people would do that. So I'm asked if I mis-read the look, if I'm reading too much into it, if I'm being over-sensitive etc.
You start to doubt yourself and your lived experience. I wish there was a course you could take on 'how to be disabled' - not how to cope with the medical aspects, but how to 'be' in the world, how not to be angry / bitter, even when they *are* all out to get you etc! Dave, do you have any spare time to write one?
Able-bodied people have a strong BLOCK against truly understanding. They can manage sympathy - especially if there is someone disabled they know - but they can't usually manage empathy, and if they do, it isn't for long.
ReplyDeleteIt's the way we're wired; spend too much mental energy on something that doesn't affect you personally, and you are wasting your time that could be spent on something that DOES affect you.
Empathy comes from sharing experience - and even there, there are degrees.
Compassion is usually sympathy: and the world needs it. Able-bodied people with compassion towards those who need help are extremely necessary: most of the people working in a wheelchair factory will not be disabled themselves.
But it gets discouraging for those of us with disabilities, being misunderstood or scorned over and over. Finding another person who 'gets it' without me having to explain is such a gift.
There's a disability event here in the UK called Naidex which is like a huge exhibition, trade show, conference, etc for professionals and private individuals. I've been a couple of times.
ReplyDeleteBoth times I've drooled over mobility aids I will never be able to afford; I've collected up access guides for tourism locations; and most importantly I've met up with a bunch of disabled bloggers for lunch.
We do not treat that lunch as a support group. We do not go in for oneupmanship about who has experienced the worst pain or the nastiest abuse or the most incompetent professionals. Frankly we're all thrilled to meet up, to laugh and talk and share a meal, in happiness and joy.
But it is a beautiful thing to be in a social grouping where everybody at the table already knows the reality of our lives. We don't have to assert the truth of an experience. We don't have to provide a backstory. We don't have to explain why X is a problem. We already understand that barriers are an everyday grind and that sometimes you just don't have the energy to make a complaint and that the lack of loud, escalating and immediate complaining *doesn't* mean it wasn't really a barrier.
It's very refreshing.
I'm saddened but not surprised that some people doubt that you're accurately reporting your own experience. So frustrating.
ReplyDeleteAn acquaintance recently related a story about how a store they shop at had gotten sued by somebody in a wheelchair due to the ramp not being accessible. Acquaintance seemed surprised that I was firmly and calmly "Sounds like they deserved it, then." I tried to explain that disabled people don't "go looking" for accessibility violations to get offended by any more than gay people have to "go looking" for homophobic behavior, women have to "go looking" for sexist and misogynistic behavior, people of color have to "go looking" for racism and discrimination, etc. Not sure whether any of it sank in...
Thank you, Dave, and to the commenters. There just aren't many places I feel such like-mindedness, acceptance, reality, etc. There's the "normals" and I have also encountered disabled people who feel guilty because they see it but don't want to acknowledge it, try so hard to live by what other normal people tell them. It's a big subject.
ReplyDelete