My college experience was very much “learn as you go” when it came not just to school but to dealing with the issues arising from having muscular dystrophy. During my time in college, I was still walking, although precariously, and starting to have trouble getting up from chairs. During my time I discovered several resources to help me both physically and financially to get through school.
The nice thing about muscular dystrophy is that my brain is not affected by the disorder. So during high school I got good grades, studied when I needed to, participated in many clubs and activities, and eventually was able to secure a few scholarships to help with paying for school. Nowadays it’s much easier to search for scholarships to apply for that match the talents and qualifications of a student. For example there are several scholarships for students with disabilities. There are even scholarships for wheelchair athletes.
I didn’t find out until my sophomore year that vocational rehab would help me pay for some of the incidentals associated with going to college. Although rules may have changed, at the time VR helped me get a computer, pay for books, and even pay for my golf cart rental. This was super helpful.
In general I think the state Vocational Rehabilitation offices can be a great resource for people with disabilities who want to become productive members of society. Even if you are not college aged, it’s never too late to get up and running with a career.
Disability Resource Center
The Stanford DRC was a great hub for me to connect with and become aware of the services I could receive. I was able to communicate my needs, find out what could be done, and I eventually got a job there helping transcribe materials for blind students.
I used the DRC several times during college. First and foremost they helped with residence assignments and act as a liaison between students and the housing office. Next, they are able to help get course rooms moved to more accessible locations. In addition when I was there the DRC provided golf cart rides to temporarily disabled students. So if anything ever went wrong with my golf cart, I could request that they come and pick me up and take me to class.
Other Disabled Students
I also was able to learn from other disabled students the ins and outs of dealing with college. For example, the blind student that called and talked to my mom also talked to me on the phone before I chose Stanford and I was able to ask a lot of questions. During my freshman year I was able to talk to a couple other students and find out where the best places to live were. One other student who was at school at the same time as me also motivated me tremendously. I never did meet him, but he lived down the hall from a friend of mine. He apparently had a very severe disability and needed round-the-clock care. Nevertheless he was going to Stanford! I knew if he could do it that I would be okay
RAs are older students who usually live in the dorms and act as the authority figure on the floor. Although they’re only a few years older, they have a ton more experience with college. Mine was a great resource just to bounce questions off about classes and things to do. I didn’t necessarily leverage her opinion on disability needs but nevertheless my freshman RA was super helpful.
Resources are available no matter what the college or university, so sometimes it takes a little digging to find exactly what you need. The Internet is so helpful for this too and can make lining up resources much easier than it used to be. For example, the University of Washington has a great page summarizing many of the above and other resources for students with disabilities who want to attend college.