Limb lengthening story on Good Morning America

On Tuesday, October 13, "Good Morning America" featured a story titled "Little Person No More" about a young woman with dwarfism, named Tiffanie Didonato, who, through limb lengthening surgery, lengthened her arms and legs by 10 inches.

Though the limb lengthening procedure is considered a controversial subject, Little People of America has stayed neutral on the issue. The organization released a position statement that neither condones nor condemns the procedure. Rather, the statement urges individuals to thoroughly investigate the risks and benefits of the surgery before making a decision. Basically, similar to other issues that could be called controversial, such as embryo screening and careers in entertainment, LPA emphasizes options, asserting that people of short stature have the right to pursue all available options and should be supported in their quest to learn about all available options.

The "Good Morning America" story followed the thought process of Tiffanie Didonato
that led to her decision to pursue limb lengthening. According to the story, the decision can be traced back to an incident that happened when Tiffanie was 15 years old, when a teacher put her on the spot in front of her peers, asking about dwarfism, which the teacher referred to as a 'disease,' and how it affected her life. Tiffanie reflected that it was the first time in her life someone had referred to her as a dwarf. The reporter then goes on to say, "The interaction was etched in her brain and, shortly afterward, Didonato decided to adapt to life, since life didn't adapt to her." For Didonate, "adapt to life" meant limb lengthening surgery.

Obviously, the stigma that Didonato's teacher placed upon dwarfism, along with the fact that no family member, pediatrician or doctor had ever raised the issue of dwarfism with Tiffanie, would create a problem for any 15 year old who is forced to confront their own difference for the first time. It is perfectly understandable that Tiffanie, or any teenager, would want to fit in. The problem is that "Good Morning America" celebrates Didonato's decision to "adapt to life," without questioning the circumstances that led Didonato to this decision.

For me, a person of short stature who has worked within the disability rights movement for about ten years, Didonato's statement reflects the differences between the medical model and the independent living model. Within the disability community, the medical model identifies disability as a condition that needs to be fixed. If the person with a disability wants to access to the same options available to people without disabilities, then the disability needs to be fixed. The medical model puts a negative value on disability, targeting disability as something that needs to be changed.

The independent living model identifies disability as a natural part of life that will affect each of us at some point. In this case, if a person with a disability wants to live an independent lifestyle, we must address physical and social barriers to accessibility, not necessarily the disability. With independent living, there is nothing wrong with disability. The problems are found in places such as -- physically inaccessible structures and services; and social prejudices unable to accept difference.

Didonato's limb lengthening decision reflects the medical model. The fact that her dwarfism was ignored, and the fact that her teacher identified dwarfism as a 'disease,' taught Tiffanie that there is something wrong with dwarfism. Naturally, when given the choice, Tiffanie pursued the opportunity to change her dwarfism.

The problem with the "Good Morning America" story is that dwarfism is not a disease. The story never explored the independent living angle of dwarfism. People with dwarfism, just like people with many other types of disabilities, are able to live healthy, independent lives, often times without any significant accommodations. The challenges that many dwarfs face don't have to solved with limb lengthening. Physical barriers can be solved with pedal extensions, step stools and reachers; and social barriers can be addressed through aggressive outreach and better diversity programs in schools and the workplace. Rather than present this side of the issue, "Good Morning America" celebrated Tiffanie's decision, embracing the idea that dwarfism was the problem that Tiffanie had to solve.

There is nothing wrong with Tiffanie's decision. The problems are found within the circumstances that influenced Tiffanie's decision. The problems are found within stories like those run by "Good Morning America" that stigmatize dwarfism.

ADAPT wraps up Fall 2008 Action

Congratulations to the more than 500 Disability Rights Advocates who were part of ADAPT's 2008 Fall Action. ADAPT is a national grassroots organization that practices civil disobedience to implement the rights of people with disabilities. In cities around the country, including Chicago and Denver, ADAPT is responsible for accessible mainline transportation. Twice a year, ADAPT chapters from around the country participate in National Actions.

The Fall 2008 Action was in Washington D.C. From September 13 - September 18, the advocates practiced various forms of civil disobedience to underscore the housing crisis facing so many people with disabilities. Because of the lack of affordable, accessible and integrated housing, and because of antiquated long-term care systems that force people with disabilities into nursing homes, thousands of people with disabilities find themselves warehoused in institutions or homeless.

Early on the morning of the 15th, the advocates stormed the lawn of the Department of Housing and Urban Development, where they set up a tent city they named "DUH" City. Using DUH city as their base, teams of ADAPT members marched off to various Washington locations, occupied the offices of key political leaders, and demanded that Washington recognize ADAPT's housing platform.

Throughout the week, many of the advocates were arrested. Most of them probably didn't get much sleep, or get much hot food. And, most probably made more enemies than friends while they were in Washington. But none of the ADAPTers went to Washington expecting to make friends. They went expecting to start a conversation, without which there would be no change.

For more information about ADAPT, visit www.adapt.org

Click here for ADAPT's housing platform.

For a much more detailed account of the ADAPT Action, visit Joe Stromando's blog