Just because I have a disability doesn’t mean I’m handicapped.

Let’s clarify what “disabled” really means: it’s a person first and foremost who just so happens to have a physical or mental impairment that limits me and my everyday life. Basically, I’m someone who has significant limits that most people may not have to deal with.

 The word Handicap has many definitions. To me, it’s where society limits me more than my specific disability does. My disability keeps me from driving, but not having adequate transportation handicaps me.

            Many people think that the disabled community has an easy life because we get SSDI or SSI, but we don’t have it easy at all! Let’s take a look at this “easy life”: Most people with disabilities want to work, but seldom get hired, especially in meaningful jobs. I’d love to be a part of the social work field, but every position I’ve looked into requires a driver’s license. Having seizures prevents me from driving, which most jobs require. Not being able to get to where I need to go is my handicap, even if I did have public transportation. Another part of that handicap is that public transportation has its own schedule, which may not align with mine. Many people also think that living on SSI/SSD is easy living. They couldn’t be more wrong. We are encouraged to work, but as long as my earnings stay within certain limits, I could lose my benefits. I’ve had this happen to me.

  My big dream of getting married became a nightmare because I was discouraged from getting married. It would also affect my benefits. Our income is now combined and cut based just on us saying I DO. Our dream of saving to buy our first home was crushed when we realized that even in the long run, we wouldn’t be able to save enough for a home. We aren’t allowed to have more than a certain amount of money in our accounts, or we lose our benefits. These are all examples of handicaps from the services that I am qualified for.

Let’s talk about handicaps, from things that were meant to “help” me, like special education classrooms. My education was not “special” at all, as my learning disabilities kept us “walled” off from the mainstream education and socialization. Which made me feel disconnected from the “outside” world. I was handicapped from learning how to build and maintain lasting relationships. Schools aren’t the only place we are handicapped. Agencies for the disabled, handicapped me as well. My disability makes it harder to live on my own. After graduation, it was suggested that I live in a group home. A place where I live with roommates, which I didn’t get to pick. Money that is rightfully mine, but I was placed on a budget that my “team” agreed on. Do you like sleeping in on the weekends or just staying in your Pajamas and watching TV? We were all awakened at the same time, with no exception, and discouraged from sleeping in. Instead, we were expected to rise and shine and go out on an “outing” (not of my own choice) with the rest of our roommates. Don’t you dare get angry and express your desire to sleep in because now you’re having a “behavior” which needs to be documented! See the handicap? I was told that this is my home, but I can’t do the very thing that I wanted to sleep in. I couldn’t react in any way because that would get me a write-up.

 Do you like going on dates and having time for intimacy? I was totally discouraged from doing that. Sure, we could date while being supervised with people documenting everything, including my body language, discussion topics, and even my meals. My disability said that I can’t be alone, so my handicap was that I really have no personal life or intimacy.

Do you enjoy a hot shower at the end of the day? While in my group home, I had to be supervised while I took a shower in case I had a seizure. Female Direct Support Professionals weren’t always available. My handicap was that I had to forfeit my privacy and my personal comfort. I did not need anyone to monitor me while taking a shower before I went into the group home or since I moved out. Nor was I allowed to establish my own routines.

Most people get to set their own appointments around their availability; however, I was not. The agency had a worker make the schedule based on their availability and not mine. Once I moved into the community, the agency told me they could no longer provide transportation to appointments, and they suggested I change the neurologist that I have had for years, because he was too far away for me to walk to. When I discussed this with the executive team, the executive director told me, “Tish, our goal here at this agency is to get everyone to your level of independence.” My response was, what support do you have once they reach my level of independence? No answer was given. The handicap: as I became more independent, the agencies were less inclined to support me, even when I knew it was necessary to do so.

The real question: what’s worse, being disabled or being handicapped?