I Didn’t Choose Disability, But I Chose Disability Pride
July is Disability Pride Month, a time when disabled people celebrate disability rights and, as the name suggests, are proud of their identity as a disabled person. I haven’t always been a proud disabled person. For me, “pride” meant ultimately accepting my disability and at the same time, finding community and therefore also culture. However, “acceptance” wasn’t an easy target.
I developed a chronic illness and mostly invisible disability at age 24. It hit me right at the beginning of what I’d consider my adult life, right when I moved into my first own apartment and started a serious job after finishing studying. Most disabled people aren’t born disabled. In fact, around 80-90 percent of disabled people have acquired their disability throughout life (depending on the country and source used). In Germany, it is estimated that 91 percent of all disabilities are caused by an underlying chronic illness. Developing a disability over time is much different from being born disabled, not only in terms of the challenges one faces, but also in the way that for a person like me, there’s a whole life before becoming disabled and then after. And that brief moment in time in between – whether that is days, weeks, or months – when you are developing said disability, in retrospect, feels like a fever dream, a hazy surreal memory I cannot fully grasp now, 16 years later.
However, what I do remember is that I was going through what I can only describe as a grieving process.
DENIAL
At first, I experienced a long phase of denial. It made no sense to me that my body would all of a sudden function differently from what it used to, which was scary, confusing, and frustrating. I went from playing volleyball every day, swimming, skiing, and jogging to zero activity. At the same time, I became so sick that I would spend most of my time in my bed, watching reality TV – which, in Germany, is even worse than in the US. Then, a few months into becoming chronically ill, I had to quit my job. As a natural consequence, I could not afford my apartment and moved back to my parents, who I’d just left a year earlier. So my whole life turned upside down pretty much overnight. The worst part was that my diagnosis came years later, so for a very long time, I did not even have the opportunity to accept my chronic illness since I wasn’t even sure it was one. Without an explanation, this could have been just a phase, right?
ANGER
Years into the journey, I realized it was permanent, but I still couldn’t fathom why I wasn’t able to do the things I used to do. How could my body just quit performing on me? I tried very hard to get back to my previous life. And the harder I tried, the less my body performed, which caused a lot of anger and resentment towards myself.
At the same time, I was a young, healthy-looking woman. So I faced gaslighting at every doctor’s appointment. They would dismiss my symptoms, ignore my concerns, and tell me this was all in my head. Never in my life have I felt so much anger and hopelessness at the same time.
BARGAIN
Then, I started to bargain with myself. I started eating healthier and lost a lot of weight, bargaining with my body that if I took better care of myself, maybe it could start functioning more like before. At the same time, I constantly ignored my symptoms and pushed beyond any reasonable limitation my body set for me.
DEPRESSION
And lastly, my mental health declined. With no diagnosis, no doctor believing me, there were no treatments. So no hope of feeling any better. At the same time, I had lost everything that used to mean something to me: friends, my ability to compete in sports, my job, and all financial stability. For the first time in my life, I did not know where to go from here. There was no way back – I tried – but there also did not seem to be a way forward.
And I felt so alone. Wherever I went, I did not belong there anymore. Joining friends at a volleyball competition I couldn’t join felt wrong. Hanging out with old colleagues doing work I could no longer do felt even worse. It was as if, all of a sudden, I became a different person who had nothing in common with all the people I used to see. Feeling displaced and lonely in a group of people who used to be my best friends was incredibly painful.
I spiraled.
The event that changed everything came four years after becoming chronically ill and disabled, when I was finally diagnosed. Having a diagnosis meant I wasn’t helpless anymore. Now that I knew what was going on with my body, I could get the right management and improve my quality of life. This put me back in control and catapulted me out of my depressive episode.
ACCEPTANCE
Once I had a name for my condition, I started connecting with support groups and people who have gone through the same grief and have come out the other side. I quickly made new friends within the disability community and realized that there is a whole other world I have never even just dipped into. Before I became disabled, I was very privileged – I still am today, just differently. The idea of becoming disabled at some point never crossed my mind. I had barely any contact with any disabled people. And I had no idea about barriers and discrimination. As a newly disabled person, it felt like I experienced discrimination daily, which, in many ways, has given me a perspective I would otherwise never have had. I suddenly felt a sense of urgency to fight back. To do something about all the challenges disabled people have to face. This shared experience of ableism opened all the doors to the person I am today. It caused me to connect with activists, to start writing and focus my journalistic work on the disability community, which, in turn, led me to ACCEPTANCE and PRIDE.
Finally, PRIDE!
I am proud to be in line with some of the world’s smartest leaders, like Judy Heumann, New York’s first wheelchair-using public school teacher who went on to become the “mother” of the disability rights movement. Leaders like Ed Roberts, who created the Independent Living Movement out of UC Berkeley, or Theresia Degener, who helped shape the UN Convention on the Rights of Persons with Disabilities right out of Germany. People like Haben Girma, the first Deafblind graduate of Harvard Law, or the activists Stacey Park Milbern and Alice Wong, who are now part of our crip ancestors.
I’m proud to be part of a history filled with moments like the 1990 “Capitol Crawl,” where activists cast aside their wheelchairs and crutches to physically crawl up the US Capitol steps to force lawmakers to pass the ADA. Or the 1988 “Deaf President Now” protest at Gallaudet University that shut down a campus until deaf leadership was recognized.
How could one not want to identify with that community?
(For more disabled leaders, read DARK’s “Disabled Leaders Part 1”)
So what is Disability Pride? Pride for me means accepting my disability, but also accepting that I will occasionally experience denial, anger, and mental health challenges. And that’s OK. It’s the reality as long as disabled people aren’t fully included in society. I will probably always bargain to some extent – that’s unfortunately a personality trait to push beyond limitations to achieve goals and dreams. I have accepted that identifying as disabled doesn’t mean I lose this boundary-pushing nature I have grown up with (and it’s not always bad to strive for more). Pride means being fully in sync with all parts of myself.
Pride means I have finally arrived. I belong. And I am happy.
To celebrate Pride, our TGDNN team joined “Kämpferherzentreffen” in Germany, an event that brings together hundreds of disabled people to celebrate Disability Pride. Of course, we have asked visitors what Pride means to them. Here are some of their responses:
Cover Image: Andi Weiland
