The conclusion, of a three part series on the Muscular Dystrophy Association (MDA), Jerry Lewis, and his Labor Day Telethon ends with some final thoughts on the MDA and some personal experiences I have had with them as the caretaker of my longtime boyfriend, Dominick.
I want to make it clear that I am not out to make the MDA look like a completely bad organization. There are many people that work for the MDA, who truly want to help. However, many of the people that work at the MDA are similar to the people that work at Burger King. It does not mean they have to be nice or enjoy their job. It does not mean they have to help people. All it really means is they need a job and they have one.
By employing people that are not sensitive, understanding, or interested in the needs of the disabled the MDA looks like an organization that does not care. In the past, it has been suggested by the disabled community locally and in other areas that MDA employees are terse and uncaring. Sadly, many of them treat the disabled as if they are intellectually impaired, though usually this is not the case.
When spending over $12 million annually in paid salaries you would think the MDA could provide sensitivity training or provide employee testing to ensure that employees understood how to treat the disabled and what their most common needs are. Rather than just offering a pay check that the public provides for a job that is sometimes not done well, why not make them earn it while doing some good at the same time?
My Own Personal Thoughts on MDA
I cannot aptly portray other people’s feelings about the MDA. I can only explain what has happened in my own case or rather in Dominick’s. I started dating Dominick in 2002. However, we had been friends since the late 90's. When Dominick and I first met, I was very curious about his disability. I had never known a disabled person personally before.
Like many individuals ignorant to the needs of the disabled, I asked all the stupid questions such as, can you feel your legs? I tried to observe his actions and reactions to certain things. At first, Dominick had many excuses for why he could not do things. Most of them revolved around his MDA doctors telling him he could not or should not do these things. This made me angry because Dominick is a very determined individual, especially when he has his heart set on his goal.
Despite Dominick living on his own (with Personal Assistants coming in to get him out of bed, dressed, etc.), going to school, balancing two jobs, and other responsibilities, his hope for the future was bleak. I could not fathom how someone with so much potential was so hopeless about their future…until our first visit to the local MDA clinic.
The experiences we have had locally have not been the best. As mentioned, the clinic visits did not go well. Further there were issues with Dominick’s wheelchair. His wheelchair was purchased by a company that did not create it the way they were supposed to in relation to his needs. This caused harm to Dominick’s body that we are still trying to repair. He asked for help and rather than offering any viable solutions, the employee at MDA continued to suggest that MDA pay to have the wheelchair repaired.
For starters, the wheelchair was made for a person 6 foot tall and Dominick is 5’3”. It’s really hard to fix that without at least getting a new seat. Additionally, the engine produced issues with speed and the batteries have never been able to hold a charge. Dominick took the help at first, even though his wheelchair had been fixed multiple times in the past. He had been told by more than one professional who works on wheelchairs that they could not fix his wheelchair. The employee, who’s chief job is listening to the disabled and being the liaison between the administrators/doctors and the disabled insisted that a solution could be found.
She continued to suggest fixing the wheelchair. Dominick continued to tell her that would not be possible especially when he had it fixed only to have it break within a day after the repairs were made (and it got to the point where a lawyer had been involved to get repairs completed after the initial purchase). Eventually, the employee decided to yell at him over the phone so loud that I could hear her across the room, because to her it was obvious that he would not know his needs or his equipment better than someone who saw him once a year for 5 minutes during clinic visits. This is when Dominick decided he would no longer deal with the MDA.
Unfortunately, that was not the last time we dealt with them. Dominick’s grandfather was very concerned that Dominick would not take the MDA’s help. It was brought to Dominick’s family’s attention that Dominick was being selfish and only thinking of himself without taking into account all MDA is trying to do for him. When Dominick asked where this information was coming from he determined that the patient coordinator was providing information, based on her opinion, to Dominick’s estranged mother.
Dominick was 25 years old at this time (and still is) and had mentioned that he was not in contact with his mother. He also requested that she not receive any information about his case or health. Even if he had not requested it, he was an adult living on his own, so the MDA, by law, should not have given out his private medical information to anyone. At this point, the MDA decided it was in their best interest to help Dominick get a used wheelchair and offered him $2,000.
It should be noted that I firmly believe they did this because I sent a letter explaining the situation and my frustration that a national organization would break privacy laws out of spite and blatant discrimination. I suggested that the worker, who lacks bedside manner, be removed.
The MDA never mentioned the problems in their reply. They only said that it had come to their attention that Dominick needed help and they hoped the new wheelchair would do him good. In some ways, it has helped, but unfortunately, the help came too late and there is more damage to repair to his body. And that needs to be done before he's the active, out and about Dominick I first met all those years ago.
Today, Dominick no longer attends the MDA clinic. Instead, he gets referrals for specialists through his primary care physician. Dominick is incredibly vocal about his needs. He is asthmatic and makes sure that it is taken care of regularly. He had spinal fusion surgery so he sees an orthopedist to check on the rods in his back and mold his AFOs (plastic foot braces).
At this point, we are more happy, healthy, and have a goal of one day starting our own organization with the goal of actually helping those in need. Until then, we can only continue to spread the message of hope as we let people know that people with MD or any type of disability can do what they put their minds to, and have a very fulfilling future if they give themselves the chance.