Want something done? Advocate for yourself and others
December 2, 2003
Real Living with Multiple Sclerosis
MY HUSBAND, WHO HAS MS, has a friend named Melinda who also has MS. She's been legally blind since birth because of a blood clot on her brain, which wasn't discovered until she was in high school. Melinda also has epileptic seizures. But she refuses to let her disabilities stop her battle for independence, or her fight to help others. Much of Melinda's success may be contributed to her parents, who taught her early in life that she could accomplish as much as anyone else.
For many years, Melinda lived in Austin, Tex., in her own apartment and was managing very well. When her MS worsened, her parents insisted that she return to her hometown of Beaumont, Tex. Melinda began using a manual wheelchair in 1998, but lives alone in her own apartment. She has a care provider that comes every day to help her with her personal needs. Her parents lend additional help when she has an MS exacerbation.
Fighting the good fight
Melinda always tries to rise above her disabilities. When she went shopping, she pushed her manual wheelchair and put her purchases in the seat. To balance the use of her muscles, she would alternate and use a walker.
During a convention at our local civic center in Beaumont, Melinda found an electric wheelchair with an open space between the foot pedals. She discovered this type of chair allowed her to measure distance in buildings by counting the floor tile blocks from one end of the room to the other. When she goes to her bus stop, she counts the cracks in the sidewalks to her destination. Not all buses in our area are equipped with wheelchair lifts, making transportation difficult for those with disabilities.
A lack of accessible ramps forces wheelchair users to travel on the street rather than the sidewalks. When the sidewalks are uneven, a wheelchair could easily turn over because one side of the crack is higher than the other.
Although electric carts are not legal for street use, many people have no other choice. Melinda and others have the right to accessibility, yet when sidewalks are unavailable or unsafe they must use the streets.
In 2000, our city had 45,165 residents with disabilities-10,915 of which were physical. The Americans with Disabilities Act (ADA), passed in 1990, doesn't require the installation of new sidewalks, but existing sidewalks and walking paths must meet ADA standards. Persons with disabilities need these walkways to access public transportation. But the lack of such walkways hasn't stopped Melinda and others.
After legal help was made available to address these needs, Melinda and her friends made a list of the different areas in the city that needed improvements. They took their list to City Hall. Some of the requested improvements have been completed, such as striping crosswalks and relocating signs to provide more clearance for wheelchairs and electric carts. Because Melinda and others fought for their right to maintain their independence, the city will begin installing or improving ramps at 16 downtown intersections.
Everyone with MS is not as physically mobile as Melinda. She's fortunate enough to have an enhanced computer that allows her to accomplish a great deal at home. Melinda is now trying to find funding for buses to collect those with disabilities in various areas to transport them to special events. On more than one occasion, Melinda took it to the streets and won.
When Melinda went shopping, she pushed her manual wheelchair and put
her purchases in the seat. To balance the use of her muscles, she would
alternate and use a walker.
Copyright © 2003, Multiple Sclerosis