The disabled need the same things everybody else does

By Ben Mattlin

When i had been six years old, I appeared on the Jerry Lewis Labor day Telethon for the Muscular Dystrophy Association. I don’t have muscular dystrophy, but i had been born with spinal muscular atrophy, a comparable progressive neuromuscular weakness. I have never walked or stood.

On the broadcast, i had been enquired for my name and age. That’s about all. Then i had been dismissed.

I never met Jerry Lewis. I never became famous, as I’d dreamed. i had been cute, though, with huge blue eyes and unruly blond curls, and i had been in several magazine and newspaper ads for MDA. For a single of them, i had been positioned standing in leg braces — which I’d utilized years earlier for physical therapy, before discovering the torture didn’t actually do me any good — and i had been told the caption more than my mind would be, “If I grow up, I want to be a fireman.”

I didn’t like this. If? My prognosis was a usual existence expectancy. Besides, I didn’t want to be a fireman! I wanted to be a scientist or a detective. So, in the photo, I’m crossing my fingers, exactly where no a single can see. I never do another ad.

Many years later, when i had been an adult, I utilized this picture to protest the telethon’s simplistic treatment of “Jerry’s Kids.” I found that many other people have been mounting comparable demonstrations. Now I locate myself asking whether our information was heard. The television hosts still request us to “help Jerry’s kids.” But does the community understand that, even additional than help, those of us with disabilities want respect?

Perhaps. MDA now pays lip company at least to the notion of disability rights. The telethon now shows some kids with disabilities doing active things. however essential difficulties remain.

Today’s telethon, for example, will feature nondisabled celebrities onstage raising money for disabled kids, who are largely offstage. i know the objective belonging to the telethon would be to increase money, and that people won’t tune in unless there are performers they want to see. Nevertheless, how can you imagine an NAACP fundraiser hosted exclusively by white people?

If you are not disabled, you may believe this may be a relatively minor issue. however it matters. another day my wife and I have been at the theater with our two youthful children. throughout the intermission, an usher dutifully came more than and enquired my wife if I required to use the restroom.

“How really should I know?” she answered. “If you have a question for my husband, why don’t you request him yourself?”

The usher do not make that mistake again.

The bigger matter is a single of respect. And while I understand the sympathetic impulse (and marketing power) of a slogan like “Help Jerry’s Kids,” I don’t believe it helps us gain respect.

Of course, MDA may respect the disabled additional than its fund-raising strategies imply. If it wants to stand out as an advocate for disability rights, however, it really should arranged a better example — and demand that its corporate contributors do as well.

When most people see those of us with severe, progressive neurological conditions, they want to help, and I am not ungrateful. The desire to cure is probably human nature. And MDA’s main objective is to be a medical charity; it claims to spend 77 cents of every dollar it raises on services, an admirable percentage, and finances hundreds of clinics and medical researchers.

Still, for the past 30 years, the information belonging to the disability-rights motion continues to be as consistent as it is simple: We’re good as we are. We don’t need fixing. We need access. We need respect. We need work. In other words, we need the same things everybody else does.

So today, I won’t be watching the telethon. My wife and I and our two kids have better things to do.

Ben Mattlin is a writer and editor who lives in Los Angeles.

BEN MATTLIN is a contributing editor for Institutional Investor and an NPR commentator.

His work has appeared in Self magazine, USA Today, the Los Angeles Times, the Chicago Tribune, WashingtonPost.com, and many other financial and general-interest publications and Web sites.

A former contributing editor for the late Windows in Financial Services, Dealmaker, Buyside, and Individual Investor magazines, he’s also written for the Mark Taper Forum, Blonde and Brunette Productions, and the children’s television program Biker Mice From Mars.

Mattlin has appeared on ABC’s Prime Time Live, CNN, and E! Entertainment Network; been interviewed on radio stations KKFI and KPFK, Los Angeles, and KSLC, Salt Lake City; and been quoted in The Wall Street Journal, U.S. News & World Report, Penthouse, and USA Today.

Born in New York City in 1962, Mattlin graduated cum laude from Harvard University in 1984. He lives with his wife, two daughters, a cat, and a turtle in Los Angeles.

WRITING & EDITING EXPERIENCE
Institutional Investor …(1997-present)
Contributing Editor
Research and write a wide variety of features. Conduct telephone interviews with and write profiles of sell-side and buy-side securities analysts across the U.S., U.K., Continental Europe, Asia and Latin America for the magazine’s All-America Research Team and other rankings.

Buyside …(1996-2005)
Contributing Editor
Write market overviews and profiles of securities-research departments, including cover stories, with biographies of principals and “best buy” lists.

On Investing …(1999-2002)
Contributor
Propose, research and write cover stories and other features for this quarterly produced by Bloomberg for Charles Schwab clients.

Thomson Reuters/​Multex.com …(1997-2002)
Columnist/​Reporter
Generate ideas and write stock profiles and other articles on an increasingly frequent basis, ultimately weekly, for this online newsletter and database for individual investors.

Capital Group Companies …(2000-2001)
Part-time Web Module Writer
Write content for retirement-planning tax modules and asset allocation modules for the web sites of Capital Research and Management and Capital International Asset Management, respectively.

Individual Investor …(1999-2001)
Contributing Editor
Write cover stories, stock profiles and how-to features for this consumer monthly. Take assignments and propose story ideas.

Other Free-lance Writing and Editing …(1984-present)
(details upon request)
Create general-interest and specialty articles for print and online, op-ed pieces, TV scripts.

EDUCATION
Harvard University …(1984)
A.B., Cum Laude. Major: Social Studies, an interdisciplinary honors concentration. Dean’s List. Honorary John Harvard Scholarship. Student government.

ADDITIONAL INFORMATION
Personal appearances on ABC’s Prime Time Live, CNN, and E! Entertainment Network, and on KFI and KPFK, Los Angeles, and KSLC, Salt Lake City. Quoted in The Wall Street Journal, U.S. News & World Report, and USA Today. Member Authors Guild of America and National Writers’ Union. Personal: married, two children; interests include computers, fiction (reading & writing), film.

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4 thoughts on “The disabled need the same things everybody else does

  1. arwa shtayyeh

    Dear Sir
    i am now 45 years old and i have myotonia dystrophy and tell now doctors told no me medicine
    i read you article and show medicine available for myotonia
    please tell me if there and how to contact doctors

  2. 61OK.COM Post author

    General questions you can call Toll Free: 86-MYOTONIC or 866-968-6642
    Myotonic Dystrophy Foundation (MDF)

  3. ella29760

    I was diagnosed with LGMD when I was 14yrs and the Docs told me there was no cure and funny thing they never scheduled another appointment even to tell me how to manage the condition and by the time I decided to use the internet to get info about the condition, my situation had already worsened. I now use a wheelchair to move around outside the house.
    In my country I seem to be the only person with MD because in these 15yrs I have never met anyone with the condition.
    People with disability should be treated with respect and not be stigmatized and denied their rights. I agree with you that more disabled people should be given roles to play especially if its for them an occasion is being held.

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