GET YOUR ORANGE ON!
It’s hard to describe the elation I felt in Washington, D.C. last week.
No that wasn’t a typo! It was pure joy to meet with MS activists from all over the country for our Public Policy Conference. That’s the annual event where we meet, share information and then visit our representatives to advocate for legislation that will benefit the lives of people with MS.
You couldn’t miss us – we were dressed in ORANGE as we walked and rolled down the hallways. No one really seems to know why, but that is our signature color. (We could do a lot worse!)
This year, we spoke to legislators about four main issues:
Ending surprise medical billing – the demoralizing situation where a patient gets a medical bill from an out-of-network provider that is considerably more than they understood it would be,
Curbing the obscene rise in the cost of MS medications ($200,000.00 and more a year in some cases)
Funding more research into both a cure for MS and for disease-modifying therapies in the meantime,
Requiring that people with disabilities be involved in planning for emergencies. As I said to the legislators and their staff, this one was particularly meaningful for me. In the past, I worked on the 10th floor of a government building and I discovered that there were several problems with the existing plan for getting people with disabilities out of the building in a fire. These were problems that I’m sure would have been spotted at the outset, if someone with a disability had been involved in the initial formulation of the plan.
Time will tell, but the response seemed very positive. As one of the conference participants said, it is very effective to look a legislator in the eye and ask them to support bills that could profoundly affect our lives. It was also very powerful to tell and listen to others express the personal reality of living with this disease. Maybe I’m naïve, but I can’t help but think we left Capitol Hill (and the chance for a cure) a little better than we found it.
Those of us with MS are used to making decisions about our own safety. We’re also smart enough to avoid relying on politicians and other non-medical people for our information.
In that spirit, I’m providing the latest medical information about the coronavirus, and how it could impact people with underlying medical conditions such as MS.
We’ve already gone through a lot, and that makes us particularly able to sort through this and make the right decisions.
Here’s to staying healthy and smart.
Although this photo says it all, I’d like to say a little more:
Her name is Sarah-Marie Da Silva, and she is a first-year zoology student at the University of Hull in England. She says that although she has frequently brought her accommodation needs to the university’s attention, they have accommodated her only sporadically. This photo was taken on a day where she found herself in a classroom without a ramp, and had no choice but to sit alone in her wheelchair in the hall.
To its credit, the university says this is an unacceptable situation and they are conducing an investigation. Let’s hope they figure it out soon. I know from personal experience that it is very hard to function (let alone learn anything) with this kind of isolation and humiliation.
LEAVE A COMMENT!
As many of us have been realizing, it’s crucial that we mobilize the disabled community to VOTE, VOTE, VOTE in 2020.
To that end, the ADA National Network https://adata.org/ will be hosting a twitter chat about accessible voting on February 26. It’s FREE, registration is not required, and we will learn more about barriers to accessible voting.
“Tweet” you there!
If you can’t stand in line for an hour or use a pencil and paper to vote (the “old-fashioned way”), does that mean you are less patriotic or less committed to get into that voting booth?
That’s what I just heard an elected official imply in a television interview. It’s unfortunate, because I am normally in lockstep with this person’s political views. And I know this person did not even think about how that sounds to someone like me, who cannot do either of the things mentioned above but who would never dream of not voting.
But it’s the not thinking about it that makes it so scary. An appalling number of our voting sites continue to be unaccessible, despite the fact that, the Americans with Disabilities Act has required this for 30 years.
Fortunately, I live in Oregon, where the only way to vote is by mail. But this is not the case in most states, and I fear that in 2020 we are still going to see people with disabilities being effectively shut out of an activity that may be more crucial this year than ever before.
What can we do? A lot of people are already doing it. They are talking to government officials, to disability advocacy groups and generally helping to raise awareness of this problem before it’s too late. Please help us be part of the solution!
For more information, see:
NOTHING IN THIE WEBSITE IS INTENDED TO BE LEGAL ADVICE.
Now that I’m retired, there are so many things I want to do. Among them is learning how to draw. I am fascinated by the ability to create portraits, landscapes, bowls of fruit and so much more from a humble charcoal pencil, and I’ve always wanted to learn how to do that.
I therefore signed up for a drawing class, put on by a local recreation department. It was raining ferociously on that first day, as I got out of my car and approached the building in my walker. It was pretty obvious from a distance that the main entrance had stairs in the front, and I assumed that there was another, accessible entrance. But as I got closer, I realized that the stairs were the only way into the building. In addition, the door was closed and there was no sign or anything else saying what to do if you had questions or problems.
So I dragged myself and my wet walker through the mud and pounded on a window. A gentleman came to the door and said that he was very sorry, but there was no other way into the building. I asked him if he was familiar with the Americans with Disabilities Act (ADA) and he said that he was, but that the building was too old to be covered under that law. He also recommended that I look into a junior college on the other side of town.
Given the rather drenching circumstances, I did not feel comfortable getting into a conversation about how the ADA would probably actually apply in this situation. But such a conversation would have included my observation that older buildings are not somehow “grandfathered” out of the ADA. Instead, the law states that government entities and private businesses do not have to undergo any construction or alterations that would either cause an undue burden or fundamentally alter the nature of the program or service. Nevertheless, those entities still have to make “reasonable” modifications or alterations to allow people with disabilities access into their buildings and programs. This often includes relatively minor changes such as building a ramp or moving to another building.
After this incident, I did contact a spokesperson for the organization and told her what had happened. I also said that I was not interested in any legal action, but wanted to help start a conversation about alternatives for future classes. She gave me some names, and my plan is to contact those people. But I haven’t done that yet and I think I know the reason: Although I understand the law quite well, I still I feel incredibly self-conscious about the whole thing and I am fighting the feeling that I am a “nuisance” or “overly demanding.”
It is so easy for people with disabilities to feel inferior and undeserving, despite what the law says. And it’s particularly interesting that even someone like me, who is very well versed in disability law, would feel this way. But that is the precise reason why I feel that I must follow through and start making those phone calls. That’s the best way to reclaim my legal and personal dignity.
For more information about the ADA and public accommodation, see https://www.ada.gov/ada_title_II.htm
NOTHING IN THIS WEBSITE IS INTENDED TO BE LEGAL ADVICE,