I guess I am writing this in response to the latest New Rules installment on Real Time with Bill Maher. The crux of Maher’s rant was that finding fault with the charitable acts of a person is nonsensical. I can agree with that part. I have no problem with people giving money to help a cause and then use the positive public relations they are able to garner from it. I studied PR and worked in the field because I happen to believe that very little good would be done in this world if not for the PR.
What I have a problem with is Maher’s lack of understanding when it comes to the experiences of disabled people. Maybe this is due to a lack of exposure. It has been a long time since Maher has had anyone with a disability come on his show, and here is a man who has never had any health woes because he is lucky.
If you are fortunate enough to never have any serious health problems, that isn’t because you are more responsible or virtuous; it is just plain good fortune. That is how we need to be talking about this. There is such a thing as able bodied privilege, and those of us who don’t have that privilege don’t appreciate those who do speaking on our behalf one way or another. We have our own voices, even if we are seldom given a platform. We are the most marginalized group in society. Believe me, there are a lot of things I’d be doing if I were able bodied, or even just a little more functional than what I am now.
Talking about “fixing” people is a whole fucking minefield for good reason. Speaking as a disabled person, I have learned to accept help when I need it, and would welcome a cure for multiple sclerosis and the numerous other ailments I suffer from. But there are a lot of crackpots out there who claim to have a way to “fix” you when you are disabled, and I should not be obligated to follow all that bullshit advice. As Maher is apt to say when it comes to healthcare decisions: my body, my choice.
I am trying the science backed therapies available to treat my MS, but guess what? If they make me feel like shit, I am not going to stick with them. I have tried some of the bullshit too, sometimes at the urging of doctors. After being bit by a lone star tick, and finding out that I am also allergic to eggs, it took Paleo diets off the table, and my kidney health has vastly improved! I know there is a doctor out there who had clinically isolated syndrome (which means she’d experienced one MS flare and then returned to normal) who has come up with a Paleo-inspired diet and touted it as a cure-all because she got better. Just because someone has an MD behind their name doesn’t mean they are always right or ethical. She would have gotten better anyway, but she saw a chance to make more money and took it, so now those of us with other forms of MS have to endure the recommendation of this diet as a total fucking cure by every hair-brained able bodied asshole wanting to fix us. MS is incurable! There are better therapies now than in the past, and with the promise of an EBV vaccine maybe it will one day be preventable. But right fucking now there is no cure!
Things become more convoluted regarding that whole “fixing” talk when you consider everything that gets talked about as being a disability. Even high functioning neurodivergent people get described as disabled. A more accurate description would be differently abled, because a lot of neurodivergent individuals are actually more able to perform certain tasks than so-called normies. Would we really want to make geniuses like everyone else?
What needs to get fixed is the representation of people with disabilities. Only we know what it is like to live with disability. We don’t need able bodied actors to portray us, or able bodied people to dictate our needs. What we need are allies, and if you can’t be an ally, get out of the way!
Yesterday, I watched a somewhat amusing video by an autistic psychologist talking about what the world would look like if we pathologized neurotypicals, rather than neurodivergent people. As far as I can tell, their only advantage is that there are more of them, so they get to dictate what's "normal" and what isn't.
I agree that most of our circumstances are the result of luck. We have intentions, and we do our best, but I imagine the universe throwing chaos balls of various sizes at us, like in a video game. One always hits when we least expect it.
We have so little control over anything. I have an easier time remembering that for other people than I do for myself. I take responsibility for things that aren't in my hands. I can't forgive myself for things I couldn't control at the time.