Autism Interview #150: Teona Studemire on the Intersection of Blackness and Disability

Tell me a little about yourself. How is college going? What are you most passionate about?

I’m currently taking the last few classes I need to finish up my A.A. Degree. It’s been really long and arduous, especially now with online classes and trying to balance a full time job for the first time in several years. I really want to become a Librarian, it’s one of my greatest passions. Oddly enough I didn’t develop it until a year or so ago when someone told me you could go to school to become one. I’d never thought about how Librarians got their jobs, but suddenly everything clicked. I’ve always loved books, and in the corner of my mind there’s this little dream of owning a small Queer bookshop/cafe duo. I’m really passionate about space though. I’m horrible at math, so it would never be a career, but I’ve always had my eyes on the stars. It’s calming seeing all the lights of stars that likely no longer exist but the light took so long to reach you across the cosmos.

You mentioned on your blog that post-diagnosis (autism), it helped you to befriend other “Autistic and/or ADHD folk” who could speak your language. How did you find these people? How have you maintained relationships with them?

I never got my official Autism and ADHD diagnosis. With so much going on in my body, I’ve had to prioritize the journey of some diagnoses over others. In my case, getting my Ehlers-Danlos Syndrome and Myalgic Encephalomyelitis diagnosed took priority since those were the biggest things impacting my life immediately. But the more I talked about my symptoms and the way my brain worked, the more people started coming in to relate to me. They were all neurodivergent, either Autistic, ADHD, or both.

The beautiful thing about making friends with others who are ND is that there’s been way less expectation placed on me. I no longer have to mask or worry about pretending to be neurotypical to appease others. When my brain just isn’t working optimally, I’m overwhelmed or in my own head, I’m met with so much understanding. We all still talk and maintain our friendships, but there’s none of the pressure to always be present and active or in your face. It’s like we’re all on a different wavelength together and just get one another. I’ve recently been dealing with a lot mentally and emotionally surrounding some family emergencies, and my Neurodivergent friends were the ones who just knew what I meant when I said I couldn’t be present because I just wasn’t in the space to do so. I needed support, but I didn’t have the capacity to keep trying to find it. They set up a way for me to get support without an expectation placed on myself or them to always be present and responsive. I know there are people here for me, but I don’t have to perform to get that support.

What are some of the most common (and/or enraging) stereotypes you encounter on a daily basis as an Autistic, Black wheelchair user? Where/when do you feel free of these stereotypes?

That one is a bit difficult. It’s like I’m surrounded by stereotypes. If I had to pick the absolute most common ones that affect me daily, it’s the trope that Black people are always aggressive or rude, especially when you’re someone socialized as a girl growing up. I often deal with people reading words that aren’t there in my message because they assume that by me just discussing things, that I’m trampling over others in the process. This isn’t in a “intention versus impact” deal either. I could be speaking on my feelings about things that affect me and speaking just for myself, and people will still rush to call me out for speaking on others and taking away other people’s right to partake or enjoy something that I find harmful for me. It doesn’t matter that I never once spoke in a way that encompassed others or demanded that they shared my feelings, but that stuff doesn’t always matter when the deliverer of the message is Black. Being autistic kinda ramps this up to another level. I even deal with this with white neurodivergent people. I only truly feel free from it when I’m talking to other Black neurodivergent. I’ve never had to deal with that stereotype in those spaces.

Another stereotype is the “Black people don’t experience pain the same way White people do” that stems from the Eugenics movement dating back to the slavery eras. It’s still floating through the medical system and played a part in leading to the “medication seeking” label that targets Black chronically ill and disabled individuals. This of course also takes into consideration the stigma surrounding addiction and how that is typically associated with Black people and people of color.

Due to this, it makes going to seek treatment an exhausting and even impossible task. The constant medical gaslighting, doctors who barely take a glance at you long enough to see past your skin color telling you that nothing is wrong with you and putting in your charts that you’re just “overreacting” and seeking medication to abuse. Black pregnant people dying before, during, or after birth because doctors aren’t listening when they tell them that something is wrong or the pain is too much to bear. It’s so hard. So many Black disabled lives lost because of doctors and their stereotypes. This one is harder to seek freedom from. I try to find other Black doctors and specialists, but this is more difficult to do and also doesn’t mean that those same doctors won’t put me through the medical gaslighting I’m accustomed to.

You mentioned on your blog that there is a misconception among non-disabled people that once you receive a diagnosis, “everything suddenly becomes better.” What are some of the specific struggles you currently face while managing your disabilities that are due to your environments, other people, society, laws, etc.?

Even after being diagnosed, a huge struggle is that many doctors still don’t know much about EDS and ME. Both are considered rare but after being on twitter for a few months, it’s truly a disservice done to us that we’ve been taught that. From the #millionsmissing associated with how many of us ME patients just go under the radar because doctors either misdiagnose us or tell us it’s all in our heads and the EDS patients who are treated for only one or a set of our symptoms, but the rest are ignored. It’s still hard to find accommodations and treatments for me and without work credits. I’m going to be fighting a long battle before I even see the government acknowledge me as disabled.

I pay for most things out of pocket. Even with a diagnosis, my insurance wouldn’t cover my power chair because I can still walk. It doesn’t matter that walking hurts and that I’m too fatigued to lift myself from bed most days. It doesn’t matter how hyper mobile my joints are. I didn’t meet the criteria for my chair to be approved. The only reason I got it is because friends pushed me to crowdfund, and I was lucky in that I was able to have it fulfilled in less than a month. Many do not have that experience.

When it came to my chronic migraines, I was in line for injections to help at the request of my Neurologist, but my insurance called it “experimental” and denied coverage three times. Now I just suffer when the flares come, and I’m stuck with a migraine for weeks at a time. I need a caregiver and a service dog because I live alone, and my ability to do basic things like clean and cook are severely impacted to the point where I can barely do those things. I somehow have to figure out how to acquire those services on my own.

Being diagnosed also didn’t make it so that I no longer had to deal with people invalidating my access needs. Needing wheelchair access, to sit in the area dedicated for disabled people, etc. My disability is dynamic. My condition ranges throughout the day, so my needs and things I’m able to do change with it. There may be days where I’m not using my mobility aids, I may have the strength to walk to my apartment dumpster to take out my trash, but I’ll need my chair just to get to the other side of the apartment complex where my mailbox is. Because of this, I often deal with people trying to tell me what I actually need.

I know my age plays a part in it. Unfortunately people have this misconception that only older people are disabled or the only disabilities are ones that involve missing limbs or the complete inability to walk. Seeing someone in their twenties using a cane is held to a different level of scrutiny than older people. I’m always asked “what did I do to myself” or “how did I get hurt” when people see me using my mobility aids. It doesn’t even cross other people’s mind that I could just be disabled at no fault of my own. I always answer with “I’m just disabled” and the most deadpan expression on my face, watching as the realization sets in and they get flustered and stumble out an apology.

What are some important issues surrounding the intersection of race and disability?

It’s really important that the way race and disability intersects not go ignored or brushed over anymore. I have to constantly see white disabled people telling black disabled people to “stop bringing race” into things because “we’re all disabled,” but quite frankly, that’s completely ignorant, and the same things we often hear from racists who don’t like it when we talk about the way our race plays a part in our disenfranchisement. My experiences as a Black disabled woman are not going to be the same as a White disabled woman’s. There may be some overlaps, which is what intersection is about. But unfortunately, the way I’m treated while navigating the world of disability, medical treatment, etc is impacted both by my disabilities and the color of my skin.

As I referenced earlier, there is a huge problem regarding the medical treatment of Black pregnant people. So many have died or had traumatic experiences when it comes to carrying and birthing children. Take Serena Williams, for example– her story wasn’t a one-off or rarity. There are many, many stories of doctors ignoring us when we tell them we’re having a problem with something during pregnancy or birth. Too many stories of nurses ignoring our wishes, or pain, or wants, to push us into decisions we wouldn’t be comfortable with when we’re in positions of vulnerability.

Another example is the issue of disabled people being considered not worth saving. This is something that impacts us all, but imagine what it’s like being Black and ill or disabled. We already deal with the fact that Black people’s deaths aren’t taken seriously. Black disabled people make up half the victims of police brutality, and we watch people justify their deaths all the time. Can you imagine that that also affects doctors’ decisions on who to save and who to not save?

What are some promising steps towards greater accessibility you’ve seen in your community (if any)?

Due to Covid, I can only speak on my community of loved ones that stretches across a few states, but after I started speaking out more on disability and access needs, I’ve started seeing way more non-disabled and neurotypical people talking about disability and making things more accessible to us. Things like making sure we don’t leave the public scooters certain cities have, just lying on the sidewalk which can get in the way of wheelchair users and other disabled people who can’t get around, move or step over them. I’ve also seen a lot more advocacy for the continuation of working from home, tell health, etc. because after the implementations have shown this year, there has never been an excuse as to why disabled people who had been asking for these accommodations for years were constantly denied it.

Anything else you want to mention that I didn’t ask you about?

Just a reminder to other disabled and neurodivergent individuals that this is a long journey. It doesn’t start or end at a diagnosis. If you feel like you’re being walked over, ignored or gaslit, you don’t have to take it if you’re able to see someone else. This of course is completely dependent on what you have access to and what your insurance or finances allow, but you don’t have to accept mistreatment. You know your body. If something is wrong and your doctor is ignoring you, that is medical neglect.

My rheumatologist completely ignored me for months, she misdiagnosed me and insisted on treating me for a condition I do not have and never had. When I brought up Ehlers Danlos Syndrome as a possibility my PCP believed I had, she brushed over it. When I went to a Geneticist, within five minutes of hearing me walk him through my symptoms, my struggles and how everything had progressed, the first thing he told me was that I had Hypermobile Ehlers-Danlos Syndrome, and that I shouldn’t have been ignored for so long and on medications that weren’t helping.

It’s okay to ask questions and do your research. I read medical journals, I spoke with doctors and other EDS patients for months while trying to find a doctor who knew about EDS. I knew my Rheumatologist was wrong, and I’m thankful my PCP listened to me and has been on this journey with me, willing to help me get the answers I needed that I now have.

Connect with Teona:

Blog: www.teespoonie.com 

Twitter: www.twitter.com/tee_spoonie