Accessibility takes too goddamn fucking long.
My brother was paralyzed in October 2023. We got him home from the hospital (in Texas, when we live in Iowa) in a clunky old hospital chair. He hated it. He was scared and angry and in pain and his life had just changed forever and he couldn’t do anything for himself in that wheelchair. His first goal (aside from learning how to transfer) was to get a wheelchair. My family was lucky enough to afford one so we thought it would be easy enough. Nope.
We couldn’t buy him a wheelchair. He needed a prescription. For a wheelchair. A doctor had to examine him and declare him in need of a wheelchair. It wasn’t good enough that he had scans and tests showing tumors cutting off his spinal cord. He needed his primary care doctor to examine him during a physical and write a prescription. He was making 2-4 transfers a day, tops. He had no energy to get to a doctor. Home health was in and out every day. He had no time to get to a doctor. He didn’t get a prescription for almost a month. Then it had to go through insurance.
We asked if we could skip insurance and just buy a wheelchair for him. Nope. They wouldn’t sell us one, not even at full sticker price. It needed to be approved by Medicare. We ordered a wheelchair, a nice one, a good shade of green, sporty, small. It would let him move around the house. He would be able to cook, to reach drawers and get stuff from the fridge and brush his teeth and put his contacts in at a sink. We were told it would take awhile, maybe two months. Silently we all hoped he would be around to see two more months.
He went on hospice care on a Saturday in March. On Monday, I was calling his friends to come see him before he died. I got a call on his phone. It was the wheelchair company. They were about to order his wheelchair, she said, but there was an issue with insurance— had he stopped being covered by Medicare? Well, yes. When he started hospice care, he got kicked off Medicare. The very nice woman I talked to told me to call her if he resumed Medicare coverage so she could order his wheelchair. He died less than 12 hours later.
We ordered that chair for him in early December. Medicare didn’t approve the order until March. He was dead before they got around to it. He wanted that fucking wheelchair so badly. The only reason he had any semblance of independence and any quality of life for the last five months of his life was because the wheelchair company lent him an old beater chair, a very used model of the chair he ordered. If I could go back and change one thing about his end-of-life, I would get him his dream wheelchair. He told me again and again he couldn’t wait to get it, so that he could feel like a person again. He made the best of what he had with that old beater chair, but it still makes me mad to this day. He was paralyzed. He needed a chair that afforded him dignity. We had the money for it. And yet, we were left waiting for five months, for a chair that wouldn’t even get ordered until the day he died.
I didn’t expect this post to resonate with so many people. Thanks to everyone sharing their stories and their pain in the tags and replies. I don’t have anything poignant to say. I just wanted to share a picture of my brother here. There is a place for outrage and grief, but one must not also forget there is joy.
[ID: two photos of a young man sitting on an orange manual wheelchair. In the first picture, he is seated with the wheelchair facing sideways and he is smiling at the camera. In the second picture, the wheelchair is angled towards the camera and he is holding up peace signs with both hands while sticking his tongue out. End ID]
