halfin
Senior member
- Joined
- Jun 29, 2009
- Messages
- 540
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
I was at an ALS seminar yesterday put on by the local MDA. The information was interesting although a bit discouraging, some promising stem cell treatments but years away. But what I want to rant about is the feeling of being a second class citizen even here at a conference devoted to the disease. I attended in my wheelchair, although I can walk modest distances. It reclines and was much more comfortable for the 4 hours of presentations, plus it gives me much more mobility. It is very fast, compared to my walking with my cane at a snail's pace.
We got there early and some of the MDA staffers were having coffee, so I asked if I could get some. Now I know how I used to be treated in such circumstances. They would have said, we're going to be serving coffee soon, but otherwise you can go down to the lobby and get some Starbucks (which was what they were drinking). But instead they looked down at me in my wheelchair, looking so worried and concerned for me, and assured me that coffee would be available soon, they were going to be bringing it out in a few minutes, it would be right around the corner. Well, OK, they were being nice. But this is also the attitude you'd have towards a child who needed special protection.
At the end of the conference I went up to ask the speaker a question. I wanted to know why SOD1 mutations in all of neurons, astrocytes, and microglia all indepedently lead to worsening of ALS. I had some other questions, too, but it was hard to get his attention. It was crowded, and my wheelchair took up room. People kept asking me to move so they could squeeze past. Nobody seemed to realize that I was there to ask a question. I finally stood up (which I still can, luckily) and was able to get up close and chat with him. Once I started I sat back down after a few minutes because my legs got tired. But while I was sitting there waiting my turn, I felt like a cross between a child who should be seen and not heard, and an inconveniently positioned piece of furniture.
The worst event happened while I was talking to a wheelchair salesman. My chair is a loaner from MDA, which I appreciate, but once I get my insurance straightened out, I will need to get a permanent chair of my own. We were talking pros and cons of front wheel drive, and I was trying to show him what I didn't like, that when I turn, it slams my body to the side. I tried to warn him to get out of the way but he didn't understand. My voice is not that great and it was noisy. So I just did it anyway, turned a little in place, and he had to jump out of the way as the bulk if the chair pivoted towards him.
I felt I had demonstrated my point, but he did something that in retrospect was really shocking. He said, here, let's fix this so you don't try to go too fast in this crowded area, and reached out and turned the speed control on my chair, that I was sitting in, down a notch!
Now, I had set the chair's speed the way I wanted it. I like being able to go fast, the conference was in a hotel and some areas were some distance away. Yet this random person felt like he had the authority to change adjustments on my personal wheelchair. The closest analogy I can think of for an able bodied person would be for someone to come along and untie your shoes, telling you that this would keep you from going too fast in the crowded room. It would be unthinkably rude and condescending, yet this guy did functionally the same thing to me, and thought it was OK because I had ALS and was in a wheelchair.
I do appreciate it when people offer help, but it seems hard for people to see someone in a wheelchair as an adult worthy of respect.
We got there early and some of the MDA staffers were having coffee, so I asked if I could get some. Now I know how I used to be treated in such circumstances. They would have said, we're going to be serving coffee soon, but otherwise you can go down to the lobby and get some Starbucks (which was what they were drinking). But instead they looked down at me in my wheelchair, looking so worried and concerned for me, and assured me that coffee would be available soon, they were going to be bringing it out in a few minutes, it would be right around the corner. Well, OK, they were being nice. But this is also the attitude you'd have towards a child who needed special protection.
At the end of the conference I went up to ask the speaker a question. I wanted to know why SOD1 mutations in all of neurons, astrocytes, and microglia all indepedently lead to worsening of ALS. I had some other questions, too, but it was hard to get his attention. It was crowded, and my wheelchair took up room. People kept asking me to move so they could squeeze past. Nobody seemed to realize that I was there to ask a question. I finally stood up (which I still can, luckily) and was able to get up close and chat with him. Once I started I sat back down after a few minutes because my legs got tired. But while I was sitting there waiting my turn, I felt like a cross between a child who should be seen and not heard, and an inconveniently positioned piece of furniture.
The worst event happened while I was talking to a wheelchair salesman. My chair is a loaner from MDA, which I appreciate, but once I get my insurance straightened out, I will need to get a permanent chair of my own. We were talking pros and cons of front wheel drive, and I was trying to show him what I didn't like, that when I turn, it slams my body to the side. I tried to warn him to get out of the way but he didn't understand. My voice is not that great and it was noisy. So I just did it anyway, turned a little in place, and he had to jump out of the way as the bulk if the chair pivoted towards him.
I felt I had demonstrated my point, but he did something that in retrospect was really shocking. He said, here, let's fix this so you don't try to go too fast in this crowded area, and reached out and turned the speed control on my chair, that I was sitting in, down a notch!
Now, I had set the chair's speed the way I wanted it. I like being able to go fast, the conference was in a hotel and some areas were some distance away. Yet this random person felt like he had the authority to change adjustments on my personal wheelchair. The closest analogy I can think of for an able bodied person would be for someone to come along and untie your shoes, telling you that this would keep you from going too fast in the crowded room. It would be unthinkably rude and condescending, yet this guy did functionally the same thing to me, and thought it was OK because I had ALS and was in a wheelchair.
I do appreciate it when people offer help, but it seems hard for people to see someone in a wheelchair as an adult worthy of respect.