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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.
 
that not a good way to feel i can not change it but this will make me aware of my behavior another way i would of not thought about sorry guess some people just dont think of things like this inculding me but , now will ... take care
 
Hal,

Sounds like the MDA and the vendors they cozy up to need their own internal seminar on sensitivity training! You know, one of the staffers could have offered to get the coffee for you. Then you could've made your own decision on whether to let them get it or get it yourself.

You would think that while at a seminar re: ALS that the speaker would recognize that someone approaching in a PWC might have ALS and have a question or two! People asking you to move out of the way was unbelievably RUDE!

As for the episode with the PWC vendor that blew you off because he couldn't understand you - I believe all PWCs should come with a button that blasts three different things: 1) You're an A$$ 2) Move 3) Say your prayers! These would replace the little beepy horn sound. :twisted:


You must have the patience of a saint. I know my husband would have probably run over that WC vendor!

I'm sure you went away from there very disappointed! :mad:
 
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You are so right Hal. If someone did that to my husband, oh boy! When we used to take the bus all the time, the drivers would strap the chair down, and we would tell them the correct way, which was more difficult for them. One lady had the nerve to tell him she didn't have time for the correct way. What type of chair are you looking at getting? HUGS Lori
 
Hal, I wish you would have mowed all of them down! This is just horrible and how dare that man make a adjustment on your wheelchair to say nothing about the RUDE SPEAKER! grrrrr Who was the speaker? I want to boycott them! I am soul sorry. xo Kay Marie
 
Thanks for the support, everyone! Lori, if I had my druthers I'd get the fanciest chair I could, I love gadgets. I'm holding out for the hover chair with jets to carry you up stairs. Might be a little windy for around the house though (no jokes please). Failing that I see some manufacturers have stand up chairs, that would be neat.

Kay Marie it wasn't really the speaker's fault - I don't think he could even see me at first. Basically I was looking at people's butts who were crowding around the speaker area. Maybe what I need is a cattle prod attachment for the front of the chair. That ought to clear some room.
 
How about those knife like projections that they put on the wheels of the chariots along with a tazer wielding flying MONKEY!
 
Hey Hal- keep that humour up. I always say to people- a person with a disability will ask if they need help, otherwise stay out of their way! Thumbs up- Karin
 
Karin, AMEN to that statement. :) Diane
 
Oh Hall, we know how you feel. Today was our daughter's high school graduation. She goes to a very large public school, so the ceremony was held at the convention center. First, the parking attendants could not tell us where handicapped parking was. Next, we got ourselves into the building and then found ourselves trapped in a hall. Someone forgot to turn on the handicapped elevator. After 20 minutes and a security guard, we finally got to the auditorium door. We were locked out (even though the security guard assured us we would not be.). A nasty door watcher told us we should have used the escalator. REALLY! I explaned that my husband was in the wheelchair for a reason - ALS. After waiting 40 minutes, the hateful women holding the door finally got ready to open it. She moved her friend (on a walker) up to the front. We wheeled to the handicapped area as fast as we could. We were then told our son could not sit with us - only one person could sit next to the handicapped person. When the security guard saw that I was about to snap, he let my son pass. After the ceremony, we were huslted out of the auditorium. No one knew where we could catch an elevator - the two nearby were broken. After finding one WAY down the hall, we went downstairs. I parked my husband to the side, and went to find my daughter. We hugged, kissed, and congratulated her and were ready to leave. Again, we ran into two broken elevators. We wheeled to another building, and found one working. When the door opened, the nasty door attendant was there, and she wouldn't let us on! There were only five people on the elevator (capacity 14) and she said the wheelchair was too big. The door closed with her laughing. She rode the elevator and did this 3 more times. At this point, I was about to blow. Finally, the door opened and the elevator was empty. We made it to the car, and, 4 hours after leaving our house, we were finally headed home. THE DAY FROM HELL. Fortunately, I got the name of the VILE women that works for the convention center. I'll be making a call tomorrow. What is wrong with people!
 
Oh Missy! Not a pleasant way to celebrate your Daughter's graduation...I am so sorry. Send me her name and I will call toooo! hugs
 
Maggie Jackson - Memphis Cook Convention Center! White Station High School Graduation! Hideous woman.
 
These stories are nightmares. I am so angry at how you both were treated...I know I would have been not near as patient as the both of you.... Something sure needs some changes if this kind of behavior is happening in our own MDA meetings.....Hal, I wonder about writing a letter to who ever was in charge of that meeting? Just a thought? Linda
 
I am just disgusted to hear that the wheelchair rep did that to you! I really want to scream. The wheelchair acts as your legs...and for my hubby it is his legs. Talk about demeaning. This really whips me up. If you start a letter writing campaign..count me in. I am outraged!
 
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