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When I was born, I was completely healthy. I was able to walk and I could do everything on my own as a child. I never, ever thought that I might get the disease that my mom had, muscular dystrophy...
When my dad found out that it is a neurological disorder and that it can be passed on to his kids he, from that point on, was thinking of moving to the United States of America. He knew that life in the U.S. was easier and better for people with disabilities. In Bangladesh, mom had to struggle a lot. To walk she had to go from wall to wall for support. By 1991, walking was not an option. She would just sit in one place, and people literally carried her to the restroom. She had a wheelchair, but it was bulky and we had stairs everywhere so someone literally carried her to get out of the house and such. The wheelchair was just lying around – a show piece!
Between 6th and 8th grade, I began feeling the difference. When I noticed that I could not run properly - I would fall at times - my dad decided it was time to get me to the United States. In 1993 (at age 16), a muscle biopsy with the Houston Muscular Dystrophy Association confirmed what we already knew - I had muscular dystrophy (MD). The doctors said that in 10 years I would be in a wheelchair permanently; I was depressed.
After high school (while I could still walk, but with difficulty) I wanted to go to medical school. My neurologist told me that by the time I finished college and went to medical school, I would be using a wheelchair, and it would be hard for me to do the little things that I needed to do as a doctor. He said I needed to choose another career. I was always good in science-related classes, so I was really, really depressed. I didn’t know what to do. I chose accounting for my major; I had no interest in it, but I took it because I thought it was probably one of the better careers for me. It was not a very good idea.
By the time I was in the 11th grade, my aunt had to take me to school. I could no longer take the bus. I could not climb the steps.
During my first semester in college, it became very hard for me to walk. I tried a manual wheelchair, but it was hard for me to lift the chair into my car. Walking was becoming more and more difficult, but I would rather walk than use the chair.
In 1996, with the help of the Rehab Services in Florida, I got a motorized wheelchair. To transport this heavy wheelchair to our car, my dad would have to literally fold and lift it into the car. It made it very difficult to go to school. The college recommended public transportation and it was good, but they were not always on time. I would sometimes be late for class and it became very frustrating.
In 2000, after graduating from Florida Atlantic University, I bought a van and I gave it a conversion. The Florida Department of Rehab Services helped me. I had the liberty of moving from one place to another. After all that time - four years with public transportation - I finally got my freedom to move from one place to another on my own. It was fun! I was really happy.
I was introduced to my husband by a mutual friend. We talked a lot on the phone using web cam. He, too, is from Bangladesh. In 2003, I flew to Bangladesh and we were married.
It usually takes six months to one year for a spouse to immigrate to the U.S. However, since I was a wheelchair user, the Embassy people assumed that my husband married me because of my papers. It held up his immigration for five years. So, I had to wait here in the U.S. while he was back home in Bangladesh. I couldn’t go to Bangladesh that often because traveling alone was difficult.
In January, 2006, I hired a lawyer. She was a very good lawyer from Florida. I wrote her a nice letter saying what my problem was, that if my husband didn’t come here, I would have to go live in Bangladesh. I told her this was not a conditional marriage. This was a real marriage. She really helped me, and she wrote a letter to the United States Embassy in Dhaka, Bangladesh. It took almost a year for this process to take place, but in 2007, my husband came to the United States – finally! Because of those five years apart, I cherish our moments together.
That same year I became pregnant with our little boy. Every step is like a problem for me. When I had to choose my doctor from my insurance, the doctor said I would be a high risk pregnancy. So I had to get a private doctor – where I had to pay expenses out of my pocket. She was a really good doctor. She believed in me. She told me that as long as I took care of myself, if I could go to the restroom and have no problems with bowel movements, I could have a normal-born baby; that I wouldn’t have to have a C-section. I said, “Are you serious?” and she said, “Yes!” And I believed in her and my baby boy was born normal. I mean, it was a vaginal delivery. In 2013, our little girl was born.
My brother immigrated to the U.S. in 1996. My mom came in 1997. Both have muscular dystrophy; both use wheelchairs.
My brother lived with us at first and was pretty frustrated in the beginning, but he moved on. He is a very successful recruiter. He has a ramped van. And he has a beautiful family - a wife, a daughter and another daughter on the way.
My mom lives with us. My dad is a pilot, so he is away for three weeks and he’s home for one week. It is one reason my mom lives with us; so we can use the same helper to help us. We, also, live in an accessible house with open shower areas and open toilets.
When my husband came here in 2007, he went to school. He finished his Bachelor’s in Computer Science from the University of Houston and started his own business to develop websites. The reason he is in his own business is because when he worked for somebody else, there was no flexibility. So now, he has flexibility and if at times I need help, he can help me, or if my provider doesn’t show up, he can go to work a little bit late. It doesn’t matter; he’s working virtually.
Obstacle overcome - Transportation used to be a problem. Now I have my car.
Obstacle still existing - A helping home provider. We still have that obstacle. People with a disability have to really get used to it. Sometimes they don’t show up on time and sometimes they can’t. That’s a major, major problem, right now. That is the biggest obstacle people with disabilities have more than anything else.
The Department for Aging and Rehabilitative Services (DARS) has helped me. DARS is a bank of resources for people with disabilities. They guided me in the right direction and, also, they helped me both here in Houston and when I was in Florida (the name is different in Florida, but both are Vocational Rehab Services (VR Services).
And the internet is everything, no? It’s incredible. Ten years ago it wasn’t available, but now, it’s like oh, my god. You can find all your information on the internet. Yes, yes, at times you have to filter out the information you are looking for and sometimes I’m overwhelmed. So you have to sift through a lot of information. For a person who is newly disabled and wants to be mobile, they should find out about their local Vocational Rehab Services.
I have so many people questioning me because, you know, I have a ramped van now. Even though we’re in the 21st century, people look at my van and they stare at me. “Oh, wow, where did you get that!??”
Getting from one place to another is very hard for people even though there is public transportation. There are other transportation services, too, but they barely provide transportation to doctors – like the one that is provided by Medicaid or Medicare. These services won’t give you a ride to your local store or something like that. That’s a problem. And all these different kinds of wheelchairs. Most of the people don’t know about DARS. They need to utilize it.
I didn’t have fears, actually. It’s my trait. But I did cry and once I was really frustrated, but I was not scared. My mom is the biggest influence in my life because she never, ever complained about her disability. And probably my dad. He had some very, very influential advice for my life. I know at times I don’t agree with him, but he was the one that was pushing me from the bed forward. “Move ‘em forward.” Even though I had a disability and used a wheelchair, he wouldn’t see me like that. He’d always treat me like a normal person…a normal human being.
I am lucky that I have it the same way with my life partner. He is the same way. He doesn’t see my disability as an obstacle or anything. Everybody needs help. The normal person out there—they might need help. My husband opens doors for anyone who enters the room so he goes, “What’s the big deal?”
I never feel sorry for myself, and I never blame my mom for having the disability and giving it to us. I was never ever scared for some reason. I really don’t feel scared now. When I went to Bangladesh on my own, I was thinking, how would I go to the restroom? Would they help me? What would I do after I’m out of the United States? In the Asian countries, when we had to stop there, would they help? Don’t ever, ever fear anything. People are out there, and they will help you.
Two children later and I’m back to work; I’m working as a financial educator. I’m not certified as a planner yet, but I’m working on it. I really like the job I’m doing.
Our son is at a wonderful age where he’s curious and asking all kinds of questions. I remember when he was in Pre-K, I went to pick him up from school, and he asked me why I was in a wheelchair. I explained that Mommy has problems with her muscles. It’s called Muscular Dystrophy. The muscles that help her move aren’t well and, if she tried to walk, she would fall. I told him it was better, easier, and safer for Mommy to be in a wheelchair. He said, “Okay!” Before someone in school probably asked him, he had never even thought about it.
I have a lot of
family members. They’re always around and helping
me. Sometimes you don’t get along with your family or your friends. But,
family and friends are a blessing. Again, let me tell you that sometimes,
even the closest family members get frustrated. They always have to hang
around because they are helping you. So don’t put the whole burden
on one person. Try to get help from different people at different times.
Even with my helper—she’s like my friend, now, she needs time
off. If family and friends can each do a little, then it’s easier
Questions or Comments:
Questions or comments may be sent to Ayesha by e-mailing the Southwest ADA and referencing ADA StoryTeller client # 13-06-001 in the subject line.