I was just asked to be on the board of a really great and worthy disability organization,Vision Works Foundation Inc, to assist with its formation and the launch of its first initiative MS Friends, which is dedicated to helping and empowering people with multiple sclerosis (MS). The organization also provides support to friends and family of people living with MS. MS Friends’ mission is to:
[I]mprove the quality of life for people with Multiple Sclerosis, for their families and friends. MS effects all ages and races. Over 1.5 million people and their families in the US are affected by MS.
MS Friends helps people with MS who are isolated become a part of the larger MS community as well as learn how to better manage and deal with their disease. With MS, it is important to know the symptoms of the disease and medical options and to be aggressive with treating and managing it.
MS Friends, a partner of the National MS Society, will be going through transitions in the coming months to increase its reach into the MS community as well as to better educate the public. I am thrilled to be able to be a part of this transformation and growth, both personally and professionally. I hope to be able to share my background in non-profit, management and disability issues to help move the organization forward. As a person with a disability and a disability advocate, I am honored.
Amelia Davis, a person with MS and extremely talented photographer, recently published a book, My Story, that profiles people with MS, their struggles and successes and coming terms with their disease. Her book is moving and the photographs are beautiful. Amelia Davis is the president of MS Friends and quite an extraordinary woman and a true inspiration because she has learned how to live with MS and not let MS control her life. Here are a few facts about MS (from the National MS Society):
- MS is a chronic, unpredictable neurological disease that affects the central nervous system.
- MS is not contagious and is not directly inherited.
- Most people with MS have a normal or near-normal life expectancy.
- The majority of people with MS do not become severely disabled.
- There is no cure for MS yet, but drugs can help slow the course and/or symptoms in some patients.
To learn more about MS, click here.
An issue not often discussed is the blight of people with disabilities in the US. Although the unfortunate and horrific events in the gulf region last year temporarily put disabilities in the headlines, it soon became yesterday’s news. But the reality is that people with disabilities have to deal with an inequitable system and persistent prejudice every day.
According to the US Department of Labor, only 37% of people with disabilities are employed, compared to 79% of the non-disabled population. Perhaps some in the “non-disabled” world may assume that’s because people with disabilities can’t work or won’t work. However, most people who can work want to work despite the fact they have a disability. The problem is that most people are not aware of disability issues, which leads to prejudice and misunderstanding. Some employers are also afraid of making accommodations, as required under the Americans with Disabilities Act (ADA).
Prejudice and misunderstanding can also lead to assumptions; like the assumption that people with disabilities aren’t smart. I had a dear friend who happened to have a physical disability. She was a PhD and renowned learning specialist. Yet, this did not stop people from speaking to her as if she was a child. This mentality also leads to employers hesitating in hiring people with disabilities. Educators also carry prejudice resulting in lower quality education or inappropriate placement of students with disabilities.
People with disabilities are the most vulnerable in the US (and other countries), primarily because of how society chooses to deal with disability issues. Often, reasonable accommodations make education and employment completely feasible and accessible for people with disabilities. However, when employers and schools won’t even consider hiring or accepting people with disabilities, how are they supposed to lead meaningful, productive lives? It’s time we start to change how non-disabled people perceive and treat people with disabilities. The disabled are among the poorest, least educated, most underpaid, and least employed. How is that fair and equal?
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