July 1st will be the beginning of Disability Pride Month. Sometimes these monthly recognitions can be exhausting. Autism Month is in April. LGBTQIA+ and Autistic Pride Month is in June. So, why after several months of celebrations, debates, sales, marching, colors should we celebrate Disability Pride in July? Because of people like my dear friend Jerry W. Conner, Jr. who just passed away at 6:45am on June 24th, 2024.
Jerry was born in 1981. Jerry was diagnosed with Spinal Muscular Atrophy which is a form of Muscular Dystrophy very early in his life.
I first became acquainted with Jerry on a messenger app. I had just been identified as Autistic. I had also just been declared disabled by the Social Security Administration in the Spring of 2012. I was new to being officially disabled. It was a difficult time in my life. Accepting that I am disabled meant that I knew there were people looking at me who couldn't mind their own business and judging me as fleecing the system because I could walk, talk and do things on my own. But, I couldn't get gainfully employed. In those first few years, I was feeling a sense of helplessness. There was only one person I knew at that time who could understand what it was like for me, without someone accusing me of feeling sorry for myself. That person was Jerry W. Connor, Jr. Jerry and I texted our conversations with each other. I remember telling Jerry about how I felt. I remember asking Jerry what being disabled was like for him. Jerry would tell me that it was something he had to accept, because life didn't give him the option to be otherwise.
Jerry's disability was different than mine. Spinal Muscular Atrophy weakens the muscles in the center of the body. These include shoulders, hips, arms, legs, and can cause scoliosis in the spine. The disorder is life threatening, as it can affect the movement of the chest when Jerry would breath. Some with Spinal Muscular Atrophy have to use a respirator. Others like Jerry live with tremendous pain. When someone like Jerry gets a cold, flu, COVID-19 and/or pneumonia it can be fatal. Jerry faced these issues every day.
Jerry was very helpful to me when I accepted being disabled. Then in 2018 and 2019 came an even greater challenge. It was during November 2018 that I started feeling excruciating pain in my back. The pain was so severe that walking from the living room in our old apartment that was only 625 square feet to the kitchen less than 12 feet away, was so painful that I would have to sit down in a chair in the kitchen before walking the rest of the way to the bathroom. When I would walk from the bathroom to the bedroom, I couldn't do another thing without first sitting down on the edge of the bed to rest from the pain in my back. In December 2018, I received the news that I have a lumbar disk protrusion that was causing the chronic pain. Since I was able to walk even just a few shore distances, there was no way Medicare would have authorized a wheelchair even with my doctor's recommendation. So, we obtained a manual wheelchair from a mother who's daughter passed away.
The following Spring I started doing some aquatic therapy that did wonders for my back pain. However, the pain it is not completely gone. When I started using a manual wheelchair in the spring of 2019, I had to learn how to take it out of the back of our car and wheel in and out of places. One day, I was wheeling myself into the lobby of a Best Buy. Before I could wheel myself over the second threshold of the second door, a guy behind me took it upon himself to place his hands on the handles and wheel me through the door. While he had good intentions, the man should have asked me if I wanted his help. My wheelchair is not a piece of furniture, and I am not a piece of furniture just because I use a wheelchair. The wheelchair is part of my body. When I told Jerry about my experience, he understood from his own experiences. Even though Jerry was in a power chair, he would often find people pushing him in his wheelchair out of the way in a grocery store, so they could get something off the shelf by where he was parked. Jerry also told me about how people would pet him on his head in public as if he was a puppy dog, saying that they hoped he would have a better day. Jerry understood my experiences, because of his own. It was so comforting to know that I could talk to Jerry about what was going on in my life. It is one thing to discuss things with people who pity disabled people, or say the most horrible things. When I would talk with Jerry, he understood.
There is another thing about Jerry. Jerry was gay. Jerry experienced social isolation because he was gay, and disabled. Jerry's sister Michelle was his caregiver. Michelle accepted Jerry as he was. Jerry's parents did not. Jerry shared with me the arguments he would get into with his parents, with Michelle advocating for Jerry, because Jerry's parents wanted to move Jerry to live with them so he could get gay conversion therapy. It is easy to say to most people "just get up and walk away to go somewhere else." Jerry could not just chose to leave a situation like his family arguing with each other. He would have needed the weather to be such that he could wheel himself outside. He couldn't exactly open a door to leave by himself. He also couldn't have done much else. When someone like Jerry has to be in a situation like that, without being able to move his muscles, the pain is torture on top of one chaos after another.
If all that was not enough, Jerry was rejected by many men. A lot of people who are disabled are stereotyped as being asexual. Disabled people are sexual humans too. They want to be in loving romantic and physical relationships. Jerry tried to date, but, men would show up for the date, see him sitting in his power chair, then walk out with the excuse that they remembered that they had other things to do. Jerry had only his family to love and care for him. But Jerry didn't have someone to love and love him. Jason and I did fall in love with him romantically and emotionally. We considered Jerry to be our brother bear. Jerry lived in Illinois. Jason and I live in Minnesota.
We paid a visit to Jerry and Michelle in the Fall of 2016. We spent a very pleasant time talking with Jerry and his sister. Jerry and Michelle received us warmly and Jerry was a sweetheart. We talked, exchanged some kisses and hugs and had a lovely time with him.
Jason and I didn't hear from Jerry in a long time. The last time we talked with Jerry on Facebook Messenger was February 10th. I tried to message Jerry. But, we got no reply. Yesterday, June 23rd, Michelle called me to tell me that Jerry had pneumonia several times, and COVID-19 since we last chatted with him in February. Jerry had been in excruciating pain. Jerry and his family decided that he needed to be placed in hospice care. We got the word this morning that Jerry died at 6:45pm.
While I am very sad to have lost Jerry W. Conner, Jr. I will always remember him as a warm friendly guy, who was so important to Jason and I. Jerry's strength and courage give me tenacity and fortitude. I am proudly gay and Autistic. I am proudly disabled, no matter what a society of influenced by systemic ableism throws at me.
On July 7th, Becca Lory Hector will join me for the episode Self-Care: Getting Enough Rest. In addition to our conversation about reenergizing ourselves, we will also talk about Disability Pride Month. The show on July 7th, will be dedicated to Jerry W. Conner, Jr.
Disability Pride Month is a recognition that being disabled is nothing to be embarrassed about. Being disabled does not make us "less human." Disabled people don't need pity or sympathy. Disabled people need programs, health care, jobs and housing that gives us the supports we need. Disability Pride Month recognizes the importance of people like Jerry Connor, Jr. Disability Pride Month is not "inspiration porn month" where people can say we inspire them to make themselves feel better when they say things like, "Thank God nothing like that ever happened to me." The fact is anyone can be disabled or become disabled at any time for any reason.
Now it is time to celebrate Disability Pride and remember people like Jerry W. Conner, Jr.
