June 15, 1999

ON ARTISTRY AND ADVERSITY

Recently, in my "Keeping in Touch" column in MDA's bimonthly magazine, Quest, I addressed the short-sightedness of the National Endowment for the Arts (NEA) in failing to seize upon a unique opportunity to help enlighten the public about the crucially important notion that creativity cannot be limited by disability.

I was referring to the NEA's steadfast refusal to bestow even the smallest amount of financial support upon the MDA Art Collection, a truly one-of-a-kind gallery of artwork created by individuals with any of 40 neuromuscular diseases. (The MDA Web site includes a great deal of information on the MDA Art Collection including on-line sample works of art.)

Apparently, I'm not the only one who feels frustrated by the lack of respect afforded these remarkably talented and dedicated artists, whose work, represented in paintings, drawings, sculptures and mixed media collages, travels to museums and galleries across the country.

Among the many communications I received in response to the column was a letter from a father whose artistically gifted teen-age daughter has a form of spinal muscular atrophy:

Dear Mr. Ross:

It is sad that the NEA doesn't consider the art of those with muscular dystrophy to be worthy of attention. When I consider the art produced by such talented individuals it makes my heart swell within me knowing the great effort and willpower it took to complete the project. I know because I watch my daughter who has Werdnig-Hoffman disease struggle on a daily basis to complete projects for school.

I marvel at her abilities, especially when I observe how she has to manipulate her small frame in order to do the things she does, legs folded, laying on her side, her back bent at almost a ninety degree angle due to scoliosis, her non-functional left arm placed as a brace to hold her right arm up, supporting it due to her weakness, and her head laying on the table next to her picture as she draws.

Elsha has been a straight "A" student since 7th grade and is currently ranked number one out of over 700 other children in her sophomore class. It may take her longer to complete her homework assignments because of her medical problems but she is a very determined little girl.

The NEA's snub is just another example of the many uphill battles people with disabilities face. I hope that with your help and the talent of these special people, we can together educate the public to the fact that everyone deserves a chance to become great.

Sincerely,
Joel Stockseth
South Weber, UT

I've quoted this letter at length not just as affirmation of my own sentiments but also to let artists with neuromuscular diseases know that the difficulties and challenges they face, while perhaps underappreciated by the NEA, nonetheless are recognized and applauded by a great many discerning observers.

Those admirers include parents and family members such as Mr. Stockseth, but also readers of Quest and viewers of our MDA Telethon, visitors to our National Heaquarters in Tucson where the MDA Art Collection has its permanent home.

There's a playfulness, a boldness and an adventuresome quality that makes the art in the Collection an unalloyed pleasure to behold. It's all the more remarkable, as Mr. Stockseth points out, that many of these artists have to deal with tremendous physical challenges in order to touch our minds and our hearts with their artistry.

Anyone who has revelled in the visual marvels created by these courageous artists can testify that the results of their laborious efforts have indeed been worth it, many, many times over.

With every good wish . . .

The Ross Report Archive