I discovered an interesting podcast today called “Disability after Dark.” It is available on iTunes and Spotify. I am not a podcast person so I don’t really know if it is available anywhere else or how to tell anyone to find it. I find podcasts too similar to talk radio and just can’t get into them long term. The best I can manage is checking something out every now and again. I envy people who really get into listening to podcasts because there are so many interesting people out there with interesting, entertaining, important, and educational things to say.
Anyway, I found this podcast and the host of it interviewed former Miss Wheelchair Pennsylvania, Barb Zablotney. Topics incuded what it’s like to be disabled and have Covid-19 and medical ableism. Not wearing a mask during the pandemic was called out as privileged and ableist which I had never considered. I can’t say I disagree with it. That inability to consider someone with a compromised immune system, maybe from cancer treatments, has to go on a food run, is beyond self-centered. It shows the lack of empathy that comes with ableism. They can’t imagine these things because they have never had to. They don’t even know someone chronically I’ll or disabled. Must be nice.
I don’t know if I have experienced medical ableism but I have experienced a great deal of misogyny over the years and I am not above yelling at doctors anymore. I have had doctors disbelieve me or minimize my pain because of my gender. Everything was either in my head or caused by stress. I had to live, for years, with endometriosis pain. The upside is my pain tolerance is pretty amazing. The down side is my pain tolerance is pretty amazing. Because I don’t “act” like I am in pain, people don’t believe me. I have probably experienced some kind of microaggressions and chalked it up to something else.
What really surprised me was Barb talking about people on social media who said she was faking her disability for attention. Excuse me?! It’s pretty damn hard to fake a spinal cord injury. Because someone has made it their purpose in life to advocate and educate for part of the disabled community they are “faking for attention?” Seriously?!?
There is one of 3 things going on here.
- People are total uncomfortable with disabled people being seen and being given a platform for their voice.
- Cynicism greater than my own.
Gone are the days that the disabled are locked up in institutions. Unfortunately there are people who are totally uncomfortable with this. To a point I get it. Seeing a disabled person reminds us that are bodies are not infallible. It makes us face our mortality and realize we are one car crash away from permanent brain damage or a wheelchair. It reminds us that we can have children who are born with things like cerebral palsy, Down’s syndrome, or autism. However, being forced to face this does not give people the right to lash out at the disabled person. We have done nothing wrong. I highly suggest watching the documentary Crip Camp on Netflix for Frank discussion on this and to see what the disabled community had to go through in order to gain the right to be members of society.
As for the cynicism component, I am probably going to come across as an asshole here. Oh well. There is a small group of people who claim to be ‘transabled’, or a disabled person living in a abled body. These people want to be disabled and some have done things to disable themselves on purpose while others just fake it really well. Here’s a news story on it, and another, and one more. My reaction when I learned about this
I did not know my face was able to make that expression. Having this level of body dysmorphia is, in itself, a kind of disability just like an eating disorder and needs treated with therapy. There is something seriously wrong with someone who is cutting off their hand, having elective surgery to have their legs amputated when there is nothing wrong with them, or making themselves blind. I don’t want to say it’s an attention seeking thing, in some cases it might be, I don’t know, but body dysmorphia and Body Integrity Identity Disorder are mental illnesses needing treatment.
If anything, people on the net are judgy, incredibly and unapologetically judgy. The internet has created a certain level of cynicism in most people. The internet has exposed us all to things we didn’t think existed along with the stupidity that comes with things like eating Tide pods. Just when we think we’ve seen everything, someone on the internet has to prove us wrong.
The thing is, these transabled people are hurting those who are actually physically disabled. Imagine you met someone on the net who wasn’t disabled but told you they wanted to be, or that they live like a disabled person complete with leg braces and a wheelchair. Now, when you come across the next person who says they are disabled, you are going to wonder if they are telling the truth. You are going to wonder if they are doing this for attention.
Then there are medical conditions that cause disability that people, including doctors, don’t believe exist such as fibromyalgia. Or things like arthritis that people don’t understand can be disabling because “everyone has it” and it’s downplayed. We’ve accepted that arthritis is a thing that happens when you get older that makes it hard to use your hands. The thing is, you can get arthritis in places you don’t think about like your rib cage. You can have it in every single joint in your body. It can cause joint deformity.
Then there is the group of people who are drug seeking and fake pain for narcotics. This is a problem in itself that has resulted in doctors being skeptical about people who claim they are in pain where there isn’t something that can physically be seen like a broken bone. It has totally screwed over chronic pain patients. We now have trouble getting the pain medications we need to improve our quality of life.
Being disabled, being in chronic pain, being chronically ill and not believed is a horrible feeling. You are basically being told you don’t matter. You are denied proper medical care, you are treated like a lesser human being. You are discriminated against. In short, it sucks. There are reasons that the suicide rate in disabled people is 50% higher than the general population.
I have been told that fibromyalgia isn’t real and to find a better doctor (I have a totally awesome doctor who is damn good at his job and I wouldn’t trade him for anything). I have been harassed for parking in handicapped spots despite my DMV issued placard/plates. I have had people give me dirty looks for using the motorized carts in the store because I look healthy and there are enough people that use them that don’t need them – like to give kids rides that ask for them (I’ve seen it). My service dog has been traumatized by people grabbing his leash to force him to go to them to be petted.
Being disabled sucks. Dealing with society while being disabled sucks even more.