Found My Y: Disability Isn't A Dirty Word
Last updated: October 23, 2023, at 2:46 p.m. PT
Originally published: October 13, 2023, at 7:03 a.m. PT
By April Snow
Director of Donor Systems & Support, YMCA of Greater Seattle
On my 28th birthday, I was diagnosed with Rheumatoid Arthritis. I have lived for 20 years in a world built for people without disabilities. My story isn't unusual, but I hope sharing it will bring knowledge, a little more understanding, and a start to change.
My disability came on quickly. And, as you might imagine, it derailed my whole life. I was working as a nursing assistant and planning to be a nurse. I wanted to work in the Emergency Department. I had my whole life planned out. I had wanted to be a nurse as far back as I remember.
Then, one day, my pulse went over 200, and continued to do so. When I went to the doctor, they assumed it was anxiety and put me on medication, but it didn't get better. Misdiagnosis is a common issue for those with chronic disease. It can take years to get a diagnosis because doctors or medical professionals either don't believe you or blame them on your weight, the symptoms come and go, and many other reasons.
I was lucky. I received an accurate diagnosis within a couple of months after the original visit. All because of one retired doctor who volunteered at a free clinic. I will never forget him and will always appreciate what he did. I went to see him about my pulse, and he saw things beyond that issue. He told me to see a rheumatologist, and I did. My diagnosis would change over the years with things added, but at the time, I was diagnosed with Rheumatoid Arthritis with lupus-like tendencies.
During the diagnosis timeframe, I started a new job. And I met my first obstacle of living as a disabled person. I was working and using a cane. My job was to assist residents with their medications. One day, I was pulled into the director's office and asked how I was doing. Then they asked if I thought I should be working there. I was confused. I asked, "Was there any issue with my work?" No. But there was an issue with my cane. Apparently, I looked too much like one of the residents. I lost my job that day.
I was devastated. My dreams of being a nurse were suddenly gone. What was I going to do? If they didn't want me working there, I doubted anyone would. I reached out for help but didn't know much about what resources were out there. The State wouldn't help because I didn't have children. And I didn't know anything about other types of support—everything spiraled from there. I lost my apartment because I couldn't work to pay rent. I was homeless.
Despite everything, I was and am still so lucky. I have a loving, supportive family. In my stubbornness, I didn't want to accept their help. But they didn't take no for an answer. They made me move up to Seattle with them. Yes, they made me and let me know I had no choice, that their help and love were and are not optional.
That was a difficult time. Stress is a bad thing for auto-immune disorders. It can cause them to flare up, and at the time, I had no idea how to deal with it. I had lost my job, house, and partner because he couldn't move with me. Did I say things were difficult?
After moving to the Seattle area, I met someone new, and we "fell in love." And I thought things were improving. We moved in together, and after a while, I found myself in a verbally abusive relationship. My disease got worse. I could barely walk, still could not work, and was isolated from my friends and family. Then, the Y came into my life.
I learned about an assistance program at Harborview Medical Center and got free health coverage. My rheumatologist there mentioned that the Seattle Y had a program that would lower the cost of your membership based on your annual income. I applied and received free membership. I couldn't do much, but I signed up for the water aerobics class. I was able to go and be around people. I had a small community while there and was getting low-impact exercise. I got stronger and eventually got strong enough that I was able to work. I was strong enough to join my community again and leave my abusive relationship. While I moved on from the Y, I will always remember how they were there when I most needed them and needed a community.
I also have the Y to thank, in part, for my move to non-profit work. The first job I received when I was well enough to work was with a non-profit almost 20 years ago, and the rest is history. I have been in this field since and now work for the YMCA of Greater Seattle.
It's been a long journey. I am a woman with a disability living in a world that is not built for us. I have faced many challenges over the years. Some problematic situations come from well-meaning people, like the group of women who prayed over me in a circle to be healed in the grocery store because I was in a wheelchair. Some were not so kind, like the time I was asked to stay in my wheelchair at work instead of walking because they were worried I was going to fall. I've been demoted and forced to job share for a job I had years of experience in. All the while, I had to watch the other person becoming the lead because I had missed work due to my disability. I've had people yell at me when they see me walking after seeing me in my wheelchair because I'm not disabled enough to need it. So, I must be faking it, right? The list goes on. I was always quiet about it all. I didn't fight much, and I didn't educate people.
Then, in 2020, something in me woke up. I started realizing that I didn't have to be quiet. That I could speak up and I could educate. I could advocate for myself and others. It was my first step toward my work in disability justice. Disability justice focuses on the most marginalized of our communities, something disability rights haven't quite accomplished yet.
I will end this by saying something we discussed at the YMCA of the USA in-person Employee Resource Group meeting this year. 1 in 4 people have a disability. 1 in 4. Mine is one of many stories out there. If you look around you, you probably won't see that or know that about people. My hope is that more people have the opportunity to share their stories and that everyone opens their perspectives and gets involved in the disability justice discussion and movement. It is not always a safe world to say you have a disability. This needs to change. Disability is not a dirty word.