Crip Commentary Blog

The Jerry Lewis Telethon never really changes. Sure, there are variations from time to time, such as this year’s occasional appeals for donations to aid hurricane relief efforts. Lewis told Larry King on Friday night, “I’ll make it clear to the people, that if you’re going to send me $20, send me 10; send the other 10 to these people that are in trouble.” (Note: “send ME.”) The comment that struck me most was when he said, “I don’t have a board of directors I have to get permission from. I’m going to do it from my heart.” (I can’t help wondering how MDA’s board of directors felt about hearing that! Lewis really does think he is a one-man salvation operation.)

But some aspects of the Telethon stay the same every year. Last night, during the first hour, there was a profile and an interview with a family whose young daughter, Morgan, has spinal muscular atrophy — the same condition I’ve lived with for 43 years. Yet Morgan was treated as though she’s living under an imminent death sentence. The father, a fireman, begged for donations to save his daughter’s life. Over and over, the supposed tragedies of Morgan’s life were emphasized: She seemed so normal as a baby, until her “devastating” diagnosis. She is so weak that she needs people to help her do everything, even go to the bathroom. She might get pneumonia and die.

When prompted, Morgan herself took the microphone and sweetly urged viewers to call in a pledge in order to “save lives.”

This is an example of one of the worst aspects of the Telethon: the use of children to evoke pity. I worry about the message this young girl is receiving about her own life, her own future, as well as the messages internalized by other children with disabilities who may be watching the Telethon. If she is raised to think of herself as a victim, as weak and dependent, she may never develop the confidence and skills she needs to manage the resources that can assist her and support her independence. If she accepts this image of herself as a dying child, she may quash her own ambitions, thinking of her future as empty rather than potentially full. If she learns to view herself as a tragedy, she may never embrace her own human worth.

To me, Morgan appears to be very bright and energetic. So perhaps she will grow to be a strong, effective, self-determined woman with a disability, despite the messages given to her as a child. I hope so.

At least this year Jerry Lewis proved that he can patronize other people besides just people with disabilities. During his appeal to viewers to give both to “his kids” and to the hurricane relief efforts, he described his reaction to the scenes of suffering and devastation he’d seen on the TV coverage of New Orleans. He said that these residents had had their “self-esteem washed away” by the rains and wind, and emphasized that the survivors must be feeling both “frightened” and “embarrassed.”

Why does he assume that enduring this catastrophe should make people feel embarrassed? Why does he believe their self-esteem is gone? Was he just trying to strike a melodramatic tone to increase donations? Maybe. Or maybe this reveals something about his general attitude toward human beings’ most difficult experiences. His statements seem to equate adversity with shame.

I have no doubt that those who survived Hurricane Katrina are suffering right now, very profoundly. They are experiencing physical and mental stress to a degree that goes way beyond the difficulties inherent in a chronic disability. Hundreds of thousands of people have lost their homes, possessions, pets, even family members — and at the same time, they had to contend with a breakdown of the social and economic infrastructure that they depended on. But we only make their situation worse by looking down on them, projecting shame or embarrassment on to them. If anything, these survivors should be proud of their strength and determination to survive, and they should be able to expect our respect as well as our support.

Charity recipients are too often made to feel worthless, which is an injustice in itself. Help and support should not come with strings of condescension and superiority attached.

For more information about the Telethon, and the protests against it, go to http://www.cripcommentary.com/LewisVsDisabilityRights.html

The U.S. House of Representatives voted this week to withhold funding from the United Nations unless it complies with a number of demands for administrative and financial reform. Even the Bush Administration expressed discomfort with this rash legislation. The Senate is unlikely to go along with the House, so the legislation won’t be enacted, but the vote was just another in a long line of anti-UN actions and gestures on the part of US politicians. Probably the most hostile such action was taken by President Bush himself, who nominated a notorious UN-basher, John Bolton, to be our nation’s ambassador to that much-maligned international body.

Last year, I had an opportunity that few Americans get: I spent two weeks at the UN, watching and listening as delegations from dozens of countries discussed the content of a proposed International Convention on the Promotion and Protection of the Rights and Dignity of Persons with Disabilities. This treaty, in the spirit of the 1948 Universal Declaration of Human Rights and subsequent conventions, would affirm that people with disabilities have value and rights equal to all other people, and would establish guidelines for the recognition and protection of those rights. I helped to write and edit Daily Summaries of the meetings during which representatives of nation states and of nongovernmental organizations (NGOs) debated and illuminated issues related to employment rights, economic security, privacy and family rights, protection against torture and violence, educational opportunities, equality before the law, the provision of assistive technologies, and other key rights.

Because of my experience at the UN, I have a different perspective on its function and value in the world. While the mainstream media tends to focus on the UN’s high-profile squabbles and stalemates, I know that a whole lot more happens in that impressive building in Manhattan. The UN isn’t all corruption and antagonism. Every day, every month, hundreds of people engage in the business of trying to make the world better for its citizens.

The painstaking efforts involved in drafting this treaty on the human rights of people with disabilities is a perfect example. Twice a year for the last three years — and probably for at least two years more — government representatives and disability advocates gather in New York to hash out the details of a document that will act as a standard for the treatment of hundreds of millions of the world’s inhabitants — those with physical and mental disabilities.

These delegates brought with them a vast range of views of disability, based on different cultural concepts, legal frameworks, and political systems. Listening to these discussions, I would sometimes marvel both at the enormous barriers which seemed to stand between different nations and cultures, and at the tenacity with which the delegates would work through these barriers to reach a common understanding on a particular point.

I am under no delusions that the UN, or any organization made up of human beings, operates entirely by pure motives or that it always achieves constructive outcomes. I think reform is probably necessary and good, as long as it’s designed to make the UN stronger, not weaker. But I hope politicians will temper their criticisms with at least some acknowledgment of the important and worthwhile role of the UN. For while the World Trade Organization and several other international bodies dedicate themselves to aiding business success and profitability, the UN still promotes goals such as “development, humanitarian assistance and human rights,” as well as “overcoming hunger and poverty, ending conflict… promoting democracy and the rule of law and protecting our environment.”

I also hope the media, instead of just reporting on the major political battles within the UN, will start to pay more attention to the wide range of projects and activities that take place there. Moreover, I wish more Americans could have the chance that I had to see the UN in action — not just a few ceremonial gestures or sharp words in the General Assembly, but the unglamorous, vital work that takes weeks, months, years; those difficult, detailed conversations during which dedicated people with divergent views come together to identify the problems that still plague the world and, word by word, solve them.

This is the very first posting on the new Crip Commentary weblog, written by me, Laura Hershey. Some of you may have noticed that cripcommentary.com hasn’t been updated in over a year. I admit it’s rather embarrassing that my featured column still exhorts readers to register to vote in the 2004 presidential election! Believe it or not, I haven’t been lying dormant in my bedroom all this time. In fact, I’ve taken a full-time job (more about some other time), and I’ve continued to write for various outlets — most recently a piece about Terri Schiavo for thenation.com . What with the demands of work, occasional activism, and everyday life, the “Whenever Web Column” was often neglected. Besides those excuses, I found website management and HTML authoring — two areas in which my skills are rudimentary at best — to be quite time-consuming and often frustrating.

So now I’m trying a new approach. This software seems pretty easy: I just have to write what’s on my mind, click a button or two, and my words go online for the world to see. Plus, there seem to be some nice interactivity features which some of my readers may enjoy it. I might even get some other activists and writers to contribute blogs of their own. Feedback is more than welcome.

Okay, enough about the process. Next I will write a post in the “World Events” category.