Why Deaf People Should Boycott Jerry’s Telethon

Posted on 3 September 2007. Filed under: Advocacy, Audism, Disability |

Every year at around this time, Jerry comes along to do a telethon about “his” kids. Meaning, all children with muscular dystrophy. Jerry wants, most earnestly, to find a cure for them.

Today, disabled bloggers and other sympathizers from across the blogosphere are blogging against Jerry’s telethon. (Go to this site and follow the links to some of the excellently written blog posts on this subject. Even if it means you miss the rest of mine. Seriously. Or if you’re still wondering why you should bother, then read on.)

You may be wondering two things. One, why would people who themselves (in many, not all cases) use wheelchairs, or even people who have muscular dystrophy themselves, object to a telethon meant to “help” them? And, two, why do I say that Deaf people should care?

Let me tell you a story that I hope might help.

A few years ago, I started experiencing some mysterious pain in the heel of my right foot that made it nearly impossible to walk. Every time I put weight on it, the pain was excruciating. I could only barely bring myself to walk the two blocks to and from the metro; the idea of going any further than that was unbearable.

Yes, of course, I went to the hospital to check it out, and got a referral to a foot specialist, and made an appointment to see him as well. But in the mean time, my mobility was drastically constricted. I knew that if I didn’t do something IMMEDIATELY, my life would be restricted. Without some form of accommodation, I wouldn’t be able to face up to the idea of hopping out the door to go a few blocks to nearby restaurants I enjoyed at lunch time. Side trips after work to go to restaurants or stores would be simply out of the quesiton. Even going to the cafeteria in my building at work would have been agony.

So I brought out an old pair of crutches and started using it. Presto chango — the pain, of course, did not go away. I still had my new, temporary “mobility impairment.” But at least now I was no longer restricted by it, or at least not in the same way. True, using crutches makes it cumbersome to carry other things or deal with doors. And too much crutch-walking made my hands tired. But at least now I could walk about as far as I liked without having to count my steps and decide how much pain I could take before I started. Crutches gave me an astounding degree of freedom.

Doctor appointment day rolled around. I went to see the foot specialist. If it matters, it turns out I had something called plantar fascia. But the relevant bit is how the doctor reacted to the idea of my using crutches.

“You don’t need them,” he said.

I explained I found mobility easier with them. I didn’t go into all the details. I didn’t point out, for example, that as someone who does not drive, the inability to bring myself to walk more than a block or two at a time is a MAJOR limitation on my ability to go ANYwhere AT ALL. But given that this doctor, as a specialist, had to know just how much pain I was in or how much it limited the walking I could do, you would think that I shouldn’t need to go into that level of detail. But no. “You don’t need them,” he said again. And, if I recall, again. He just could not seem to process the idea that, for me, crutches were not a sign of infirmity to be abandoned at the first chance. For me, at that time, crutches represented freedom.

Is my point clear yet?

Do you see a parallel, for example, between this doctor’s attitude toward my use of crutches and the attitude of some doctors and parents toward the use of sign language with deaf children? Some people see sign language as, roughly, the Deaf person’s equivalent of crutches. For them, sign language just isn’t as good as “the real thing”–which, for them, is spoken language. Sign language is a sign of infirmity, to be abandoned at the first chance.

Spoken language–or mobility without crutches, or mobility without a wheelchair–is just inherently better. Even if it consumes all your psychic energy and concentration, even if it imposes massive restrictions on the range of choices you can make in your life, it’s just inherently better to be “normal.” Or, if you flunk normality, then it’s still just self-evident that it’s automatically better if you can at least manage to convincingly FAKE being “normal,” no matter what cost you have to pay for succeeding. As long as you’re the only person who has to pay that cost, as long as other people don’t have to look at discomforting reminders that they themselves could someday become disabled as they age (crutches, wheelchair, hearing aids, sign language, all create the idea that “Wow, *I* could someday need these things if I live long enough”), then–isn’t that just OBVIOUSLY BETTER? Doesn’t it make you happy to know that you are no longer contributing to other people feeling mildly discomfited for a moment or two each day? Isn’t that enough by itself to make it worth all the enormous moment-to-moment sacrifices you have to make in order to save others that transitory twinge of discomfit?

Of course not.

But don’t forget the next tactic that hearing, temporarily able-bodied people use to save themselves discomfit: THE CURE. People want to cure deafness. And, of course, people want to cure muscular dystrophy.

Now, muscular dystrophy is different from being Deaf. There isn’t all the cultural baggage and identity baggage that goes with it. Some types of muscular dystrophy can limit the life span. That alone makes it worth a cure. You probably wouldn’t find nearly as many people with muscular dystrophy who would reject a cure as you would find in the culturally Deaf community.

But, nevertheless. People with muscular dystrophy, and people with disabilities in general, may not always necessarily reject medical research or cures — but they DO object to HOW people raise the money for them. What they object to is the premise on which Jerry’s whole telethon is based. The premise here is, “Oh, these poor poor children are in wheelchairs, how horrible. They are CONFINED to wheelchairs, how horrible. We have to rescue them from this tragic fate, the fate of the WHEELCHAIR.”

But, using a wheelchair is no more terrible than using sign language. True, it doesn’t create the same sense of cultural identity and community solidarity that any language, by its nature, is bound to create. But, the mere fact of using a wheelchair is not, in and of itself, tragic, any more than it is tragic that some people find sign language to be a far easier mode of communication than speech. A wheelchair is not even confining. As I found first hand, mobility aids in general can be immensely liberating.

Wheelchair users object to phrases like “confined to a wheelchair,” in part because it is just plain offensive. How would you feel if someone characterized you as being “confined to communicating only through sign language” as if this were, in and of itself, something to be mourned? Instead of celebrating that so many alternatives exist for communicating? Or, in the case of people with mobility impariments, for mobility? But there is another reason to object to phrases like “confined to a wheelchair.” And that reason is that the phrase just point blank makes no sense. If I hadn’t picked up a pair of crutches, then my life would have been limited to the commute between work and home, home and work, and that would have been it for the weeks it took to completely heal my plantar fascia. I was not, by any means, “confined” to crutches, any more than a person who cannot walk is “confined” to their wheelchair. I was FREED by my crutches, just as any person in a wheelchair is clearly FREED by (never confined to!) their wheelchair.

But the idea that wheelchair is a confinement, that a wheelchair or any other kind of accommodation to any kind of disability (crutches, a TTY or video phone, closed captions, Braille, anything) is itself inherently tragic because they (to hearing able-bodied people) symbolize and represent the disability that is also tragic —

All of this is the kind of attitude and perceptionconveyed each year through Jerry’s telethon. The telethon presents temporarily able-bodied hearing people with yet more images of people with disabilities as objects of pity and as people to cry over. Jerry’s telethon reinforces the idea that any person who walks, talks, thinks, hears, sees, moves, or DOES things differently is a person we want to help not because they are human beings who deserve more options in life but simply because they are inherently tragic figures who ought to be–well, more human. “Human” here being equated to “normal.” “Normal” meaning able to walk, talk, etc., like “normal” people are “supposed” to. Because if you don’t do these things, then you aren’t really human. You’re just something to be pitied, an object that sits there passively waiting for other people to come help you. Your sole purpose in life is to give other people a chance to show how generous and kind they can be. You have no real purpose of your own.

That is why Deaf people should care when any hearing, temporarily able-bodied person depicts any person with a disability as being inherently “tragic” just for existing, or “confined” to the very tools that free them. These kinds of images hurt us too, even when there isn’t a Deaf person anywhere in sight.

Whether or not you consider “Deaf” to be a disability, we’re still in the same boat. Whether or not you ever wanted to be in the same boat with “those” hearing people with disabilities, whether or not it was ever your choice, here we are. And we’ll not get out of it until we work together in solidarity. We’ll not get out until ALL Deaf people, and ALL people with ALL disabilities, are able to work together to teach the rest of the world that there is nothing tragic about us merely by fact of our existence. Because “those” people aren’t “those.” By whatever labels we choose to wear — or choose to reject — we’re all “us,” riding the same boat in a sea of myths and misunderstanding. It’s time to start paddling in the same direction.

Perhaps you’re thinking we shouldn’t support hearing disabled people because, after all, they’re *hearing.* Or because they’re more “tragic” than us because they don’t have a culture and language and we do. Or perhaps you’re thinking hearing disabled people just “don’t get” Deaf culture, so why should we bother learning from them if they won’t learn from us? Or you might be thinking that Deaf people are just inherently different from people with disabilities, so there can’t possibly be anything we share in common. (Or by “different” did you REALLY mean “better”? In which case, how are you better than any hearing person who looks down upon US?)

If you’re thinking any of these things, then just follow the link to http://karasheridan.com/?p=164 and give it a chance. Read a few posts. You may come across some posts that surprise you a great deal.


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40 Responses to “Why Deaf People Should Boycott Jerry’s Telethon”

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I appreciate this post. Darn right, I’d want to get around somehow! No shame in that. Thanks.

Great post and hope this will allow others to see it differently.
It is really about the attitude of people towards us that need to change — their narrow mindedness have confined them from thinking broadly! 🙂

Hiya, Andrea. Good to see you writing again.

In 19779-80 I was Assistant Director for the Minnesota State Council for the Handicapped. (Yes, that was its name back then.) Every year at this time we gritted our teeth about Jerry and his telethon.

Ok, say it with a proud voice. as part of the disability crowd..

I’m proud to be a disabled person.

I’m proud to be a disabled person.

Well, this person said it with pride and gusto.

Hey, I’m proud for who I am…not what I am. I am not proud to be disabled. Nor am I proud that I have a hearing loss but rather I am proud for who I am and how I carry myself. The focus isn’t on my hearing loss but what I CAN do and do well.

But Andrea’s article and her links is really about people pitying other people with various conditions or disabilities as not desirable to witness such actions or attitudes. But do they really hope that no cures need to be found for MS? And that we are better of to “artistically” navigate our way through life and the life of future kids born to various disabilities or conditions?

thank you for writing this and trying to bring disabled people together. i think the first step in building true solidarity for our community is getting people to accept that we all face the same struggle, regardless of what disability we have.


The objection to Jerry Lewis’s telethon is not that MDA is seeking a cure for MD — the objection is that they’re doing it by pouring pity all over people with disabilities just by fact of their riding around in wheelchairs and doing certain things differently from other people. At least some people with MD *DO* want a cure — they just don’t want the pity that so very often comes with the attempts to raise money for it.

Good blog. I agree with the idea that the pity factor needs to stop… The way you word things can have a powerful effect, and sometimes it’s an undesired negative effect.

Andrea, thanks for guiding me to this today. Loved the whole thing the the idea of ‘flunking normality’ is wonderful. I’m going to steal that term one day. Great blog.

Another great post, Andrea! The whole “pretending to be normal” thing has got to stop, because it makes us devalue ourselves and just perpetuates the whole status quo.

There are some differences between deaf and muscular dystrophy. People do not die or lose quality of life from deafness. There are different forms of MD (Duchenne – most common and severe form). One with Duchenne has a life span of approximately 20 years. I dont appreciate the comparison in your posting even though I understand the point you were trying to get across…..

Jerry Lewis is trying to >helpsympathize<. Jerry Lewis has the right ideal. You all are just Fascists.

Wait, let me rephrase that —

Jerry Lewis is trying to help.

You all are trying to sympathize.

That is what I meant.

Andrea, I already stated that about the pitying part in my first response. Read again.

You might not like the way he collects the money, but I’m sure that nobody is turning down the free wheelchairs, and I bet there aren’t any parents who say — no, I’ll pay myself to send my child to an expensive special camp for a week. Don’t judge until you’re wearing the shoes. Muscular dystrophy is not like deafness. Many kids do not grow up to lead full lives. They die young. That’s why they continue to look for a cure. Maybe it’s not important to you, but to those of us who have friends and loved ones with neuromuscular disease, it’s important. Do we always like everything Jerry Lewis says? No. But nobody else is doing it, so we’ll continue to support him and his efforts.

The telethon is big business and that is why it keeps occurring every year.

When you donate to a charity, do you ask how much of your dollar is going to the activities of the charity, and how much is going to the administration that organizes the fundraising?

Don’t contribute to the telethon. Instead, contribute directly to the charity itself and tell them exactly where you want the money spent: on camps, services, free equipment, medical research, drugs or whatever.

The telethon IS the charity. All charities are businesses. It costs money to make money. 77% of the money they collect goes to help people. Do you really think they’d make so much money if they didn’t have a telethon, or spend money to send out brochures, make videos, as well as other PR stuff? It is naive to think otherwise. Every “cause” wishes they had a Jerry Lewis.


As a former cute little kid in a wheelchair used by my local telethon to raise money for MDA, I can tell you that those “free wheelchairs” you claim people aren’t turning down don’t even exist. These days, the majority of the money raised during the telethon goes toward research and a still-allusive cure, not patient services. Yes, they still pay for summer camp and some other clinics and services, especially for kids. But once you’re an adult with muscular dystrophy, you’re all but forgotten by Jerry and the rest of the organization.

Andrea, thanks for your blog.

I am deaf (late deafened), legally blind, and have a congenital myopathy (one of those MDA diseases). Navigating several parts of the disability community, I disagree that there is not a disability culture aside from deaf culture. Sure the cultures are different, but there very much is a disability culture among other parts of the disability community. Of course the mere existence of an impairment does not require one to identify as a part of the disability community, just as the mere existence of ears that don’t hear speech doesn’t make all people part of the Deaf community.

I don’t object to research for a cure. I’m not seeking one. Sure my disability is progressive, sure I use a lot of equipment (wheelchairs, ventilators, etc.) to allow me to be an active part of my community, but that does not require a cure any more than a cure is necessary for deafness.

Emma, a muscular dystrophy type label is not what keeps people from living full lives. I work, I parent, I am involved in my community. My disability doesn’t prevent me from doing that, nor do the disabilities of my friends and family members (I have several family members who have the same label as I do). Ultimately, will my disease, or the effects of my disease kill me? Probably, unless I get hit by a bus or something first. So what? It certainly has not affected my quality of life, nor has my deafness, nor my blindness.

The fact that I will eventually die from something doesn’t mean that I am pathetic, or that my life has less meaning than anyone else’s, nor does it mean that it is necessary to change who I am. My disabilities are as much a part of the core me — my identity — as is my gender, my race, or even my hair and eye color.

MDA isn’t the only organization subsidizing camps for kids with and without disabilities. MDA is the only one subsidizing camps using pity to raise money. It’s time the pitython stops.


Carry Anne VERY WELL PUT! Incredible points. Wishing you the best. I could not have said it better myself.

It is a telethon to raise money and HELP people. If you are against helping people who need it and raising money to HELP find a cure then sure, I can see why you would react the way you are here in this blog.

I could spin anything the way I choose to benefit or help me feel I am right. This one is in a DOWNWARD spiral. Stop being bitter and have a good day, its the only one you got!!!

I myself is deaf yes,, but also have other handicap too,, why boycott jerry s telethon, i dont care what he does, we all have handicap being deaf is one part and using sign lanuage is good for us deaf people, so why cant those mda have their own good reason to find whatever they need, we need to respect them and not be so rude abt those people,, we all are god s people and we support and help its in our heart to help, i m celebral palsy like others but mild not in wheelchair but i have hard time too,, i respect myself and i respect those who have celebral palsy or other handicap so whats big deal with yalll ,,, RESPECT THOSE WHO ARE IN NEED,,,

I linked up to this from ballastexistenz’s site and I wanted to say thank you so much :). My older son is autistic and whilst technically verbal, has not been able to use spoken language to communicate. We’ve been teaching him sign language and recently he has dropped about 95% of the verbal speech he did have and is using signs a lot more. I haven’t stopped him, I keep signing to him and explaining to others that the signs are a way of communicating, but I confess to feeling rather panicky that because he now verbally speaks very little other people will say that I’ve done something wrong (yes, I am a neurotic and daft mum). And I know it’s ridiculous. I know from my own experiences that there was a whole ton of stuff that I couldn’t communicate if I had to do it with my voice and that, when I got older, I was far better able to express myself through writing. So because I know this I’ve known how good it is that my son has found a way to communicate that he is obviously far happier with and that whilst I do talk to him as I sign, I don’t demand he talks as well. But I was wondering how to explain this to people who will see the fact he’s not talking as a step back and your thread will do wonderfully.

It never had Closed Captioned on Jerry Lewis Marathon, so I never watch…

I never watch Jerry Lewis Marathon on TV It never had closed captioned…..

Excellent post – unfortuanately it seems some people didn’t really read it (such as those claiming you’re opposed to curing MD).
To Deaf people who say they’re not disabled, I say “society considers you disabled, therefore disability rights is important to you”. Besides, the exact same kind of prejudice happens. Just as sign language is viewed as inferior to speech, wheelchairs and crutches are viewed as inferior to walking. Other examples exist. My teachers insisted my unusual shortcuts to math problems were wrong – but I got the right answer and my father, who is a mathematician, can prove they are accurate. My counselor treated homeschooling as inferior to regular schooling, despite the fact that I’m much better off for being homeschooled. In some ways I’ve been disabled by society’s expectation that I do things normally, and I’m overcoming that by doing things differently.


It is such a privilege to read articulate members of our community, like yourself, providing thought leadership. I’m sure I won’t forget the phrase “flunk normality” for a long time!

My work for the community is around mobility — specifically inclusion best practices in the travel and hospitality industry — so your cross-disability story of a temporary mobility impairment especially caught my attention.


This is a message for bullet who spoke of her autistic son preferring Sign to speaking, although hearing:

How old is the boy? That he prefers sign at the time to talk to you is significant…does he use sign with others who do not know it? Does he talk about feelings, relationships and new information in sign? There is so much here that shouldn’t be overlooked, and above all, it is his choice and his preference, a freedom he didn’t have before he learned sign.

Be patient. He may go back to using his voice once he is established in sign; especially when he realizes he needs both in his toolbox to communicate with all people. It is just one mode of many that can be used; who is to say it is the best or only one?

The important stuff is getting said with the people most important to him. That will go a long way toward establishing communication in general.

to the person that says every “cause” wishes they had a jerry lewis—-

so not true. MDA is probably the last organizations to move away from the charity model of disability. although i don’t agree with a lot of these other organizations, groups like easterseals have been able to raise money and promote disabled people in a way that does not cause harm. that’s why they have more respect from a lot of people in the community.

[…] September 4th, 2007 — andreashettle [Note: if you were looking for my telethon post, then my telethon post is here. THIS post returns our regular ReunifyGally readers to the Americans with Disabilities Act (ADA) […]

I personally have attended 6 funerals of wonderful young nephews who never got to the age of 25. Each one of them was given leg braces, wheelchairs, (manual and electric), lifts, and whatever else they needed and I can promise, it did not cost the family one penny. They went to camp each year and I have wonderful memories of their stories inbetween bursts of laughter. If any of them were here today, they would tell you that it is of the utmost importance that we find cures for muscular diseases regardless of what has to be done, and they certainly would not mind appearing on Jerry’s MDA telethon to get their point across. I know I will continue to help raise funds for Jerry’s kids because that next kid could be yours!

[…] US Chamber of Commerce September 4th, 2007 — andreashettle [If you were looking for my telethon post, then that’s here. THIS post returns regular readers to the ADA Restoration […]

There are too many comments here for me to respond to each one individually or in any kind of depth. (Which I regret, because I do appreciate everyone taking the time to say something–including the people who disagreed. And would like to be able to return in kind.)

To quickly note, though, for the sake of clarification: I am NOT against a cure for MD. I DO support the idea of people giving money to research to cure MD. And I DO support the idea of free wheelchairs and other supplies for children — AND ADULTS — who need them. I am NOT proposing a blanket boycott against all forms of helping children AND ADULTS with MD. What I object to is the WAY in which Jerry’s telethon raises this money. It creates harm toward both people with MD and toward people with all other disabilities, including Deaf, deaf, and hard of hearing people.

(And, YES, some people with various forms of MD have been blogging against it too — see the full list at http://karasheridan.com/?p=164 to find them. I do respect that not all people with MD are, or would be, opposed to Jerry’s telethon–if Karen Perez says her nephews would have supported it, then I accept that. She knew them and I, alas, never did. I’m only pointing out the diversity of viewpoints even among people whose life span is curtailed due to MD. And, Karen, although you and I clearly disagree over the subject of Jerry’s telethon, I hope you can still accept my condolences over your tremendous loss.)

Others here have pointed out that alternatives for giving to support MD research and services DO EXIST. Jerry’s telethon is not the only way to help. (If anyone has a more specific organization or resource to recommend, please post.)

Jay Croft Says: “Every year at this time we gritted our teeth about Jerry and his telethon.”

“we gritted our teeth”????? Ouch, I thought priests, including Jay Croft, were humantarians.

Ahh, Scott, yes. You could classify me as a humanitarian. But as Andrea said: it’s the method, not the objective.

Jerry has been doing this for a long, long time. I remember him clowning around on his telethons when I was a teenager. That was half a century ago. Even then, and without the benefit of CC, it struck me that it was a bit too much about Jerry.

A parallel: Do you like hearies begging for money “to help the deaf?” Some state associations actually contract with a telemarketer to raise money. The script the telemarketer uses is downright embarrassing.

Dianrez, he’s only four and we’re still working on getting him to tell us his basic needs and wants, so explaining how he feels is something he’s not at the stage of yet. He doesn’t initiate signing much yet, but if someone asks him something and I say and sign he will sign sometimes and I’ll say what it is.
He is more communicative now with signs, the other day he signed “train broken” and yesterday signed “man painting”, which he wouldn’t have done if speaking.
I keep talking to him when I’m signing as like you said there are various ways of communicating. But he’s more confident with the signs. He likes his letters and is starting to try and write some words so hopefully in a few years writing things down will be another option if he can’t speak and somebody doesn’t understand sign language.

I’m sorry but I completely disagree that Jerry is doing the wrong thing. It’s very easy for all of you adults to say that you don’t have a problem with being confined to a wheelchair. You know who you are and take pride in yourself. That’s wonderful. However, it is very different to be a young child who is different from other children. Especially a child with a potentially life threatening disease. These are not adults making a concise decision to proud in their differences but children struggling day to day. Maybe Jerry’s way of raising money isn’t perfect. But I would rather he raise money for those in need than do nothing. Perhaps if you are really serious about boycotting this particular method you should suggest other ways to help with this excellent cause. I must say I’ve read these posts and still don’t see how Deaf individuals with a unique culture and language can compare themselves to children with MD. I must admit I was somewhat ashamed to read this article that grown adults without a life threatening disease would compare themselves to children who may never know old age.

I disagree with your understanding of the annual MDA Labor Day Telethon. The focus is these poor people in wheelchairs, lets help them re-gain their abilities and freedom. The aim of the MDA Telethon and the MDA as a leading health care agency is to help find treatments and cures to the over 40 neuromuscular diseases covered by their extensive patient services programs. For the majority of people (children and adults) living with muscular dystrophy or any neuromuscular disease – it is progressive, meaning you are not born unable to use your legs, arms, or in many cases your jaw and throat muscles. People slowly loose their ability to do these things and having known several people diagnosised with an aray of neuromuscular diseases, it is especially hard to meet a young person who was in the prime of his/her life loose the ability to do everything that we as a society define as freedom. To meet a person in their thirties that hadn’t yet married and now lives everyday with the effects of ALS on his body and knows that because he choose not to marry he MUST pay someone to toilet him as fix his morning egg, is truly humbling. The MDA, nor its branded Telethon, takes these peoples lives and situations to garner donations out of pity.

Also, in the way of research. There are some fantastic progressions being made in way of nueromuscular disease research. If you want to read about the truly groundbreaking work the MDA is helping to fund please refer to their website, mda.org and follow this path: Researchers/Medical>Research News. You will see a number of nationally published articles (by the researchers) documenting the progress in the quest to find treatments and cures to these horrible 43 neuromuscular diseases.

For the majority of people (children and adults) living with muscular dystrophy or any neuromuscular disease – it is progressive, meaning you are not born unable to use your legs, arms, or in many cases your jaw and throat muscles. People slowly loose their ability to do these things and having known several people diagnosised with an aray of neuromuscular diseases, it is especially hard to meet a young person who was in the prime of his/her life loose the ability to do everything that we as a society define as freedom. To meet a person in their thirties that hadn’t yet married and now lives everyday with the effects of ALS on his body and knows that because he choose not to marry he MUST pay someone to toilet him as fix his morning egg, is truly humbling. -Olivia

Yuck! Gag me babe! Olivia, you’re just as annoying as the rest of them.

Thanks Andrea! All people with disabilities need to stand together if the dream of true equality is ever to be reached.

Oh, and did not know about it. Thanks for the information …

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