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.

If you would like to check out Part One or Part Two of this series, you can go back and read through the links posted on this page.

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.

This is the second in a series of three articles about Jerry Lewis and the Muscular Dystrophy Association.

In part one, I spoke about the promises that the Muscular Dystrophy Association makes to both the people who donate the money that supports the organization and the individuals who live with Muscular Dystrophy every day.

Let us now turn to information about the Labor Day Telethon and Jerry Lewis before moving to the third article, which is a much more personal look at the MDA from the standpoint of a life partner, caretaker, and best friend to a wonderful 25-year-old male with Muscular Dystrophy, my boyfriend Dominick.

The Telethon

MDA runs an annual telethon, which could mean the chance to shine, if you are a child, on a national or at least a local level. It is one of the many ways that MDA raises money throughout the year, though they make it seem as if it is the only way. During the year, there are numerous events which add to the collective pot-o-money that the MDA makes. The telethon is just the best-known fundraising event and gives fundraisers the chance to brag about how much they have given to MDA this year.

This is the number one reason Jerry’s Orphans do not support the MDA. The telethon is there to raise money and, according to Jerry Lewis, unless the MDA evokes pity for the disabled, they will not make any money to help them. (Jerry’s Orphans are a group that feels the MDA telethon promotes a message of pity and weakness among the disabled.)

Unfortunately, that means many children are exploited for their beauty and/or their wheelchair. If they are able to walk, many of these children stand and listen in horror as Jerry explains that they will never be normal despite their current abilities. These children will always be different and there is no real hope for them without the support of the able-bodied money-giving person.

Anyone who has watched the telethon has heard Jerry’s spiel. Imagine how these children feel when they hear it. To some, it becomes second nature. To most, they assume it is their reality.

Many children fight so hard for the MDA because they really do believe what the MDA says. They are different, they need help, and they are nothing without you. The sad fact of the matter is that this message of pity only perpetuates self-pity in the disabled community. This is supported by the fact that 70% of the disabled community is unemployed or they lack the skills to become gainfully employed.

One only needs to look at the telethon to understand how a child could grow up and be unwilling to face the challenges of being different in a cruel and taunting world. When organizations like MDA make children listen to this and beg for a “normal” person’s help, it sends the message that they are not normal. It sends the message that they are worth nothing. So, when it comes time to become something, what else are they going to do but sit in their house and wait to die? According to the telethons each year, that is all many of them can do.

Additionally, the money raised by the telethon is more for finding a cure than it is for extending the quality of life a person has. Why not split the money? The MDA is so quick to offer statistics about when people are going to die and how many people’s lives this disease affects, so why not make their lives better while they are here?

I think most disabled people would appreciate the fact that they have a chance to live in a house without barriers or have specific equipment or care that insurance will not pay for that they obviously need. A cure is nice, but if you think you are going to die, and you know how you are going to die when you do, then the idea of spending millions in research for years on end with no cure in sight before you die is not a comforting thought.

The Cost of MDA

MDA is one of the most wealthy privately-owned charity organizations. They receive millions of dollars per year. In fact, their total assets for last year were $215,198,168.

If you consider all things logically, it would be simple to split this money between research, care, equipment, and summer camps. Even if you only helped those in some areas based on the most need you would still be able to better the situations of many people.

However, charities cost money to run. It is currently unclear just how much money MDA brings in and spends for certain. The information presented here is only as correct as MDA has presented it, but there have been questions in the past about their funding and spending practices. Of course, it is rare for MDA to make their financial information readily available when requested.

Their financial discrepancies are clear when you compare totals listed in this article and examine the Better Business Bureau’s charity report on MDA. Of course, it could just be that this has not been updated since March of 2005.

It is known that the CEO of MDA makes $399,321 annually. To give you an idea of how much money that is to a disabled person, you could buy at least 16 top of the line wheelchairs ($25,000 a piece) with that money. Additionally, over $12 million is spent on paying all of MDA employees. At least 1,355 people are paid to work for MDA while the rest, many disabled themselves or families of disabled people, are not paid for their time or hard work. Additional costs can be viewed here.

Disabled people receive numerous flyers per year from the MDA begging for money. This seems a bit odd considering that the money is supposedly being raised to help them. Other mail sent is to ask for help in fundraising by working at events and the telethons because their paid staff cannot do everything.

The Spokesman

Jerry Lewis is known for being a comedian and actor, but he is also known for his MDA telethons. Jerry has worked tirelessly for the disabled community in hopes of finding a cure. However, Jerry has also cut down and demoralized the disabled, likening them to people that are less than human because they are not normal.

In an article written by Lewis entitled “If I Had Muscular Dystrophy”, he explains how he would feel if he woke up tomorrow in that steel imprisonment that is a wheelchair. He goes on to explain that he would be worn out relatively quickly because most homes have far too many barriers for the disabled. I think all disabled and aware able-bodied individuals could agree with that. The problem, and perhaps the true colors of Mr. Lewis, arrives later in the article when he says things that most people will not admit to thinking.

I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are, and I bet I’m in the majority. I’d like to play basketball like normal, healthy, vital, and energetic people. I really don’t want the substitute. I just can’t half-do anything — either it’s all the way, or forget it. That’s a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.

It becomes questionable why Jerry Lewis is helping these half-people. One might assume it was to further his career or to make himself feel good. After all, many able-bodied people believe they are good people because they help that wheelchair-bound woman get her Coco Puffs on the shelf she can’t reach. The truth of the matter is that these actions do not make you a good person.

Good people do things because they want to help people, not because they want something out of it. Based on the things we have heard about Jerry Lewis, we can only assume he helps people just to say he helps them, not because he values their input or their lives. If he were to do that, he would have to see them as complete people and not genetically mutated individuals.

If this were one isolated incident, people might assume that Jerry was just going off on a mid-life crisis or was not having a good day, but has since recovered. Unfortunately, that article set many disabled people off and Jerry has not taken to criticism kindly.

When disabled picketers arrive at MDA-sponsored events, Jerry has a tendency to be unfriendly. In the past, he has informed the disabled community not to leave their homes if they do not want pity. And just recently, he referred to a woman in a wheelchair as a “living waterbed.”

Many in the disabled community want Jerry Lewis removed from the MDA for his comments and his actions towards the disabled. Many able-bodied people think the disabled should shut up and graciously accept all that Jerry has done for them.

Meanwhile, I sit on the other side of the fence. I am able-bodied for myself and for someone I love. I am my own legs and Dominick’s, too. I think MDA needs to be reworked drastically because the focus on the disabled is gone. The telethon and the MDA were never meant to be about Jerry Lewis, bigotry, or discrimination.

MDA was meant to be an organization to help people that were disabled no matter who you are or how old you are. Sadly, those days are gone and until they are back again, I will continue voicing my distaste in hopes that the voices of those with Muscular Dystrophy will be heard.

There are some traditions in life that are as American as apple pie. One of those traditions is the annual Jerry Lewis Labor Day Telethon. The telethon is held to raise money for the Muscular Dystrophy Association and is typically shown for 24 hours live, though sometimes they air pre-recorded stories in the wee hours while everyone is sleeping, instead of live footage. As the name of the telethon implies, it is hosted by comedian and actor Jerry Lewis.

Lewis spends the entire telethon requesting donations to find a cure for the 40+ neuromuscular diseases that fall under the term Muscular Dystrophy. Unfortunately, unlike apple pie it may fail to leave a warm, sweet taste in your mouth. Instead, for some it turns out sad, bitter, and bigoted, which is not good for anyone involved.

For the past 16 years a growing number of disabled people have been picketing the MDA telethon and the inclusion of Jerry Lewis in the organization that is meant to help people with disabilities. These people, many of them who prefer to be called Jerry’s Orphans, are a group that feels the telethon promotes a message of pity and weakness among the disabled.

Everyone can agree that pity is the absolute last thing anyone needs. It does not matter whether they are in a wheelchair or not. These individuals also feel that MDA has lost its true meaning, which was supposed to be to help the disabled…all the disabled with Muscular Dystrophy, not just a select few.

These days, looking on the website, the telethon, and other forms of media you primarily see the children in their wheelchairs and leg braces. Where are the adults who once were on the telethons? We cannot assume all of them are deceased now can we, because I know for a fact that this is not true.

The Jerry’s Orphans organization, which has taken to picketing any venue with Jerry Lewis present, has caused a hailstorm of criticism. Accusations have been tossed back and forth from the disabled to the non-disabled. So, who is right, the private, corporate machine that has the ability to say one thing and do another or the people that live this life every day and have a chance to understand first hand what they need and what they are missing?

In order to really decide who, if anyone is right in this debate it is important to examine all sides. We will start with the MDA and move from there.

The Pros of MDA

According to the MDA website, there are many good reasons to support and donate to their cause. The reasons to support and donate are broken up into three, well-marketed categories: Help, Hope, and Knowledge.

If I did not know anyone with Muscular Dystrophy and had stumbled across their site on my own, I would want to donate simply because of the message that is portrayed on these pages. However, let’s examine each section a little more in depth before making any assessments on what MDA is hoping to accomplish with their website.

Help comes in the form of clinic visits, equipment, support groups, Internet chats, and summer camps. Hope is classified by research, clinical trials, and research news. Knowledge is all about information concerning diseases, offering publications and videos to enlighten people, and showing “MDA” art, which is art made by people with a form of Muscular Dystrophy.

Part of the struggle here is going to be reading between the lines. Remember, not everything you read is going to be as clear-cut as the way in which it was written. So, let’s break it down.

MDA offers Equipment

According to their website if you, a person with MD, and have a prescription and a medical need, MDA will offer financial assistance regardless of age, race, etc. This includes wheelchairs. However, there is a tricky part to this. The maximum assistance toward the purchase of a wheelchair, leg braces or a communication device is established by MDA annually.

Generally, this means that people are offered a few hundred dollars a year for repairs, which is hopefully not the year a person’s wheelchair decides to fall apart completely, since wheelchair parts are quite costly. Every 5 years or more MDA will help with some form of wheelchair purchase. Some have been told MDA will pay it all while others are told the maximum allotted amount is $5,000. This could be based on the yearly allowance though so I am certain this number fluctuates.

For the average teenager or adult with MD in a wheelchair this may include an electric wheelchair with tilt to alleviate pressure and prevent sores, elevating leg rests to increase circulation, a headrest, a special grip for their controller, and so on. My boyfriend, Dominick’s last wheelchair (purchased in 2002) cost $20,000.

Furthermore, the majority of people with MD are also on state insurance or Medicare. The insurance often alleviates the assistance with wheelchairs and other equipment mentioned. In fact, some insurance, such as Dominick’s Medicare, have been billed instead of the MDA, who merely wrote the prescriptions and did not offer the true monetary assistance their website clearly promises.

MDA offers Clinic Visits

This is true. Every MDA office has a clinic. The clinic usually runs one or two days a week and is located out of a local hospital or doctor’s office. Of course, it should be noted that the cost of these visits is usually paid for by insurance, which at the very least, should exclude them from being listed on a page soliciting donations.

I, like many, had believed MDA paid for these visits completely, and I was actually surprised to get Dominick’s Medicare and Medicaid monthly statements of payments shelled out. His insurance had been charged for the visit, rather than MDA. Dominick had told me when he was a child and his father had been laid off, the family did not have to pay a dime for his clinic visits. Perhaps since the 1980’s, MDA’s clinic policy has changed.

At the clinic visit the doctors will offer any prescriptions necessary, listen to any medical complaints you have, and run any tests that may be necessary.

Is such a clinic necessary when you look at what they do provide vs. what they do not offer?

If MDA is billing a person’s insurance, they are not offering them anything they cannot get at their primary physician’s office. The fact of the matter is that disabled people are just like other people. They know their bodies and their limitations just as well as you or I. In fact, I would gather that many of them are more knowledgeable about those things. They know what type of doctors handle what issues and they could just as easily go to these doctors to receive services without the added clinic visit.

I think Dominick sums it up nicely when he says, “I used to love to go to the MDA clinic to socialize with the doctors, the nurse who was my nurse at camp, and run into old friends with Muscular Dystrophy.”

MDA Doctors

The clinic is supposed to be a welcome change for the disabled because they will be dealing with a doctor that is familiar with their disability. Of course, this isn’t always as it should be. In many cases, these doctors only want to refer to the ‘textbook case’ portion of your disability.

For example, in past visits to the MDA clinic, Dominick was being looked at to determine the level of progression of his disease. Dominick has Spinal Muscular Atrophy Type III. He was diagnosed at age four, and though he could walk until he was sixteen, he now uses an electric wheelchair full time. Some of the symptoms of this form of Muscular Dystrophy are general muscle weakness, inability to hold the arms above shoulder width, and tongue fasciliations (a rippling/shaking tongue).

As an adult with SMA in a facility, which was training other medical professionals it seemed that Dominick was there to be the interactive textbook. The doctor called other trainees in to watch Dominick’s tongue quiver and see how high he could raise his arms. Frankly, it reminded me of a guinea pig in an observation cage and I was not very pleased when we left the clinic.

Once the trainees left, it was time for all of us to discuss Dominick rather than for Dominick to discuss any issues he was having. They talked over him rather than to him. They talked over me rather than to me, and assumed that anything in the book was all there was to say about his disability. However, most people with Muscular Dystrophy are not textbook cases. If Dominick were a textbook case he might still be walking today, but currently he is not. The MDA clinic is there to offer a service you can get from any decent, understanding specialist. Why not offer something you cannot get everywhere else?

An example would be proper female care. Women that are wheelchair bound and cannot be transferred without aid of a Hoyer lift cannot receive pap smears in a traditional doctor’s office. This is because doctors do not have Hoyer lifts. These women go without exams and many of them die from conditions that possibly could have been prevented. This would be something you would think would be offered, especially due to the severity of the issue. However, these things are not offered.

Alliances with hospitals and doctors offices to supply them with Hoyer lifts so that patients do not need to bring their own and so that doctors can adequately treat patients would be a good idea, but again this is something not offered. If you want special treatment, you need to go to the MDA clinic and if the MDA clinic does not offer what you need then you do not deserve to have it.

Even properly training health care professionals on how to help and care for the specific needs of the disabled community would be money well spent, but again, its money not spent at all.

MDA Summer Camp

MDA offers Summer Camp for children with Muscular Dystrophy. Originally, this summer camp was available for all people with Muscular Dystrophy. Eventually, this was changed to only allow children the chance to go to summer camp though this information is not readily available on their website. I had to hunt to find this out.

Summer Camp is an excellent thing because it gives children with Muscular Dystrophy the chance to spend time with others that understand their needs. Ultimately, for one week out of their year, these children do not have to worry about the fact that they are treated differently.

When adults were allowed to go to Summer Camp, children with Muscular Dystrophy were able to have a better sense of hope because they could see that life did not end at 21. It meant that they could lead fulfilling lives, just like everyone else. In essence, it gave them a mentor.

Dominick talks fondly of summer camp, and some of his best memories include a very understanding man named Jack. At one point, the scooter bound Jack saw a very tired six-year-old Dominick and gave him a ride back to his cabin so he did not have to struggle to walk across the camp. Knowing the big camp was too much to navigate, Jack made sure to come back and pick Dominick up to take him the long distance from his cabin to the community pool and dining hall each day.

Dominick was sad when the adults did not show up one year for camp though he did not know why at the time. It seems, due to funding constraints, sending the adults to camp as well cost too much money and so they were cut. On one hand, it’s nice to know that children get this release from reality, but on the other hand, it seems a little unfair that adults, who supported the MDA vigorously as children, are now left behind because they are too old to get a one week break.

For some of these adults, MDA camp was the only vacation they had each year. Unable to find care, transportation, or have their loved ones take off from work long enough to go with them, a conventional vacation was and still is out of the question for these individuals.

It seems as though MDA has lost its focus.  It is not the organization it once was. Where adults and children were both supported by the MDA, the adults now take a back seat to the more profitable children. The unfortunate part is many of these individuals have the capabilities to be talented, hardworking, and dedicated individuals if only they were truly given the chance to show all they have to offer the world.