I used to work at a Christian youth group. One night in 2005 my teaching partner, Becky Manise, and I, were leading a discussion group. We were talking to the high school students about being grateful for what they had and not always asking for more than they need. Becky said something that stuck with me to this day. She said, “I bet Drew would say that just being mobile is a gift.” I told the students, “Yes, it was a gift, because not everybody who needs a power wheelchair can afford one.” After the meeting, I reflected on Becky’s statement and my response. I do think it is a gift to be mobile. It shouldn’t have to be, especially in the United States today. But it is. As far as I’m concerned, everybody who needs a power wheelchair should have the right to receive one that they can use comfortably.
I have used a power wheelchair since I was eight years old. It’s hard for me to walk long distances due to my cerebral palsy. In order for me to be mobile, I need to sit in a power wheelchair that has the right support for my body. The kind of chair I have allows me to go into a standing position anytime I want. It also reclines. The chair also elevates so I can go up to almost any table comfortably. These movements give me the ability to change my position. Having this ability to move my body lets me help my assistants when they are taking care of my needs like grooming and other daily tasks.
I am in my chair at least twelve hours every day, and it breaks at least once a year. When my chair breaks down, I am forced to send it out to a repair shop to get fixed. When I was a kid there used to be five repair shops on Long Island, New York, where I live. When I was younger I used a manual chair when my power chair was being repaired. Sitting in a manual chair limits me significantly. For starters, in a manual wheelchair, I do not have the gift of being mobile. I cannot change my position without assistance. I am not able to help my assistant adjust my body in the seat of my manual chair. This is why it is imperative that my power chair be repaired as rapidly as possible.
When I was a preteen, we found an excellent repair shop that would give me a loaner chair if they had to take my chair away from me. It was called Dr. Tony’s Wheelchair. If the repairs were not that extensive, they would fix it on the spot. The other repair shops on Long Island merged together because it got harder and harder to accept all the different insurance plans. Lucky for me, Dr. Tony’s Wheelchair stayed strong on its own. Dr. Tony had a loyal customer base because all my friends from school that needed wheelchairs went there as a result of Dr. Tony’s good service. Once, Dr. Tony and his friend, Arnold, who worked with him, even came to my home on a Saturday morning so I wouldn’t have to wait for my chair to go into the shop. They were two very tall German men who you could tell had spent a lot of time lifting wheelchairs. It felt like they were always happy and excited to see me. They greeted me like a friend with a warm hello and a willingness to help. After Tony diagnosed what was wrong with my chair, he performed a very complicated repair that would have been much easier if it had been done in the shop. He stayed that Saturday for about three hours. While he and Arnold were working, Tony shared with us that he was retiring to Florida in a few months and Arnold was as well. My family was very excited for them both. Dr. Tony informed us that he had a cousin, Victor, who was going to purchase the shop from him. When Tony was done repairing my chair, it worked as good as new. We thanked Tony and Arnold for spending most of their day at my home. Tony mentioned Victor would be there if we needed any other repairs. He waved to me and gave me a big smile one more time before he left that afternoon.
When Tony retired, Victor kept the name of the business, Dr. Tony’s Wheelchair. The first time we met Victor he came to my house to repair my chair on a Thursday afternoon just like Dr. Tony had. Victor was pleasant but more businesslike than Tony had been over the years. Two workers accompanied Victor that day. They performed the work while Victor talked to my mom. He spoke very little to me even though I was sitting with them in the same room. My mom asked how his cousin Tony was doing in Florida. He shared with us that Tony wasn’t his cousin. They just said that to make the transition of selling the business easier for their customers. When Victor and his team left that day my chair did work better. However, it didn’t run as smoothly as it did when Dr. Tony repaired it.
The next time my chair broke down was six months later. My dad made a phone call to Victor. Victor informed my dad that he would have to bring the chair into the shop because it was too difficult for him to come to my home again. My dad and I went to the shop where we waited many hours while Victor’s team repaired my chair. Thankfully it got fixed that afternoon, but again, not to the quality that Dr. Tony had provided. Most of my friends switched to other repair shops because they had issues with Victor’s service. Shortly after that, Victor sold Dr. Tony’s Wheelchair to a large company. They eventually shut the store front down. Today there are only two huge repair companies on Long Island that everybody who needs adaptive equipment must use. Needless to say, employees at these companies are not making home visits.
Now, like everyone else, when I need a new wheelchair I order it from a wheelchair clinic. It takes up to a year for me to receive my new chair when I order one. The insurance usually denies it about two or three times before I finally convince them that I really do need all the custom details that I ask for. It is necessary for a person with a severe disability to always have insurance because custom adaptive equipment is very expensive. My chair usually costs $100,000 or more and they are only expected to last for five years. Over a typical lifetime a person who uses a power wheelchair will have spent over $1,000,000 just on their chair, if they don’t have insurance. When I get insurance to pay for most of these details, there are always additional features I have to ask my parents to pay for. I am blessed that they are able to do this. I know from growing up in the disability community that many people aren’t as fortunate.
The staff at the repair shop are overworked because they not only have to repair chairs but also have to get new ones ready. Whenever I have somebody call for me, the people are usually very nice. However, they have too many customers to give each person the attention that is needed for something as personal as your wheelchair. It is normal for them to take a month before you can get an appointment. Then, depending on what you need repaired, it could take another few months before you get your chair back. This situation is horrible especially because most disabled people cannot afford a second power wheelchair. I do not need a manual chair except when this situation occurs.
Recently, because of new Medicare regulations, my mom and I went to a wheelchair clinic. The clinic was at one of the biggest hospitals on Long Island. The security guard at the front was very nice and told us complicated directions for where to go for the clinic. It was on the basement level of the hospital and through a maze of hallways, so much so that my mother left me in a random office because she was afraid I couldn’t get through the narrow hallways. When we finally did find the office, the width of the entrance was very inadequate and I could hardly get my wheelchair through the passageway. Shortly after this, the physical therapist that was checking everyone in told my mother, who has breast cancer, that she had to walk all the way back up to another floor just to sign me in. She then had to walk back down for my appointment. My mother graciously did what she was instructed to do. While I was waiting for her, another man was being fitted for a new wheelchair. I was in what they called a waiting room but in actuality, it was just a hallway with a coat rack and a couch leading into the appointment area. Without wanting to, I could hear all that was happening during the gentleman’s appointment. There was nothing too sensitive going on, but I’m not used to hearing other people’s medical history and private issues. It was awkward. The hospital should at least put some kind of door in the appointment area to muffle the sound.
My mom came back a little while later and told me all about her long journey just to sign a piece of paper. After waiting a little while longer, it was my turn. The physical therapist and wheelchair salesperson were named Emily and Margaret. At first they were very nice. That didn’t last very long. Emily sat behind the desk taking notes while Margaret and my mother and I were on the other side of the room. Margaret had her laptop a few feet away from where I was sitting with my mother next to me. We told Margaret that I had had this chair for four years and it was time for a new one. She told us that Medicare only gives new chairs to people every five years with no exception. My mother said, “We knew this but with all the paperwork and appeals we usually have to write, we thought it best to get started early.” Margaret flat out said we couldn’t do this but she would take all our information so we could get started.
My mom then told Margaret everything I needed on my chair, as she had done since I was eight years old. I’ve been very fortunate that my wheelchair needs haven’t changed that much throughout my life. Margaret asked me if I wanted a manual chair because Medicare would now pay for a manual chair as back up when your power chair is being repaired. My mom explained to Margaret that because of her cancer she cannot assist me to move around in the seat of a manual chair. Additionally, many of my daily needs would be difficult to take care of without the mobility features in my chair like standing and recline. Margaret circled back to a manual chair three more times during our meeting. She then said, “I could see that your mother drove you in here, can you drive yourself out?” I replied by letting her know that I could drive myself but on that particular day I had injured my shoulder doing exercises. Margaret said, “Okay.” As we were wrapping our meeting she said, “ You should look for something where you could really drive yourself.” I politely explained to her about my shoulder again and the appointment ended.
I could sense that my mother was becoming increasingly frustrated by her tone of voice and her subtle body language. She didn’t let Emily or Margaret see that she was frustrated until the very end of the meeting. Out in the hallway, I asked her why she was upset. She told me how she was proud of me for being so polite but that I shouldn’t have to do that because Margaret didn’t even listen when I explained my situation. I replied, “I know but I’ve dealt with this kind of situation often and I have learned not to let people see that it bothers me.” People will eventually give you what you want if you try to be as calm and respectful as you can. They eventually listen to you. If you let your emotions take over, people automatically close their minds as opposed to staying calm and allowing their empathy to connect with you.
When a person’s primary chair breaks, the insurance company that is paying for wheelchair repairs should provide a loaner chair that is almost exactly like one’s existing chair. This would be easy to accomplish if a company provided the maximum level of support on their loaner chairs so a person who had a severe disability could use it. That would be great. Then if a person with a less severe disability had to use the same chair, they could just not use some of the support details. Currently, however, the wheelchair companies put a minimum level of support on their loaner chairs. This does not work for someone like me.
I have been able to stand up while making my valedictorian speech at my high school graduation. I have the ability to stand and see over people when I go to a sporting event, concert or play. Also, I’m able to stand and make an impact when I’m debating with somebody. My chair gives me the ability to position myself to be at people’s eye level while speaking with them. I go back to HVS most weeks when they are open to play wheelchair basketball. All this would not be possible without my power chair. This also allows me to have deeper friendships with my teammates than I would have otherwise because I get to see them frequently. The gift of being mobile has allowed me to participate in society. Our society should be able to come up with a way to grant the right to be mobile to as many people as possible.
16 August, 2023
