Not many people with disabilities can say they live independently, but I can. If people with disabilities do live on their own, at least those that I got to know, they live in subsidized living arrangements where the government pays for half of the living costs and are provided with cooking and cleaning services. I live in a regular condominium with my husband and my son with no assistance of that sort provided to me. I take care of my household and my family on my own. That’s not to say that using these services and needing them is a bad thing. It’s simply just that my level of disability allows me to be as independent as I can be. There are, of course, some things I need assistance on from time to time, but what able-bodied person doesn’t need assistance to complete certain tasks?
Living independently as a disabled person has its own set of difficulties. I myself really didn’t understand the severity of those difficulties until I moved out of my parents’ home, and each time I thought I saw and experienced everything I needed to, something new came up. The latest mishap happened to me just a few days ago. But I’d really like to start from the very beginning of my independence journey, which was just two and a half years ago. There were a total of three big sad and pathetic occasions that made me so angry with and so disappointed in our society. So here it goes…
Fire Alarm Systems
When my husband and I first moved in to our new tiny condo, we had a lot more to take into consideration than we did when we first purchase it pre-construction a few years prior. Epilepsy is a condition that is ever changing. It’s unpredictable and you never know how it will affect you tomorrow, the next day, or the day after. By the time it was time for us to move out of my parents’ house, I had already gone through the most difficult years of my diagnosis. With that being said, I had to consider everything possible that would trigger my seizures. \in my case, it was the fire alarm system at the new condo. The company behind the fire alarm system didn’t see my condition as a big deal and wouldn’t oblige with our request to reduce the light and sound system at our unit by 50%. It took us two months to get the matter sorted, and refused to move to our new place, even though we still paid for it as though we were living there, until the matter was sorted.
When I had my son, I’d been living independently for two years already. The condo management had it in my records that I have cerebral palsy and epilepsy. and they had it in their files that I needed assistance in the case where the fire alarm would go off and all those living in the building needed to evacuate. In the two years that we’d lived there, there were too many times that the fire alarm went off. But all these times were false alarms or a scheduled testing. I didn’t take any of the fire alarms seriously, and neither did anyone else living in the building. But 4 days after I gave birth to my son via C-section, there was a fire alarm where everyone actually had to evacuate the building within a minute’s time. Because I have cerebral palsy and epilepsy, I have accommodations to be picked up from my unit to get downstairs to the main floor via the elevator instead of using the stairs. Luckily, my husband was home to help me get myself and the baby ready as fast as possible through the pain. I called the front desk to ask them to provide with my accommodations. When I told them I had them, the person on the other line didn’t seem to understand what I as talking about when mentioned my disability, which is understandable. Not everyone knows anything about a disability or illness such as CP and epilepsy. Hence, I told the person on the other line I needed someone to pick me up from my unit because I had a C-section 4 days prior, to which they responded, ‘OK, so go downstairs.’ I was eventually picked up by someone, but it was only after I yelled at the person I talked to on the phone. Sometimes I feel that men should go through a C-section at least once in their life to at least get an idea of what women go through.
As more time passes of me living independently in a condo building, the more I realize that it’s really not that much different than living in an apartment building. You may own the unit you purchased in a condo building, but you still have to go by the condo manager’s rules, just like you do in an apartment building. My husband and I recently found out that doing something small as getting spare keys to our unit is something that needs permission. The spare keys we made for my parents right when we moved out of my parents’ place to our new condo was with the intention of giving them to my parents in case of an emergency. That emergency came about when I was pregnant with my son. I was home alone while my husband was working at the office when I had an grand-mal seizure during my pregnancy. That was a real medical emergency, and my parents needed to use the keys to make it to my place as fast as possible without making any stops to talk to anyone to ask permission to get to my own place. Just recently, my husband and I talked to our building manager, and he told us that it was against the rules to give spare keys to someone who’s not living in the building. He kept on talking and talking and talking, and the more he talked, the angrier I got. At some point, hearing his voice got so annoying that I had to interrupt him. I told him straight up that I really didn’t give a sh*t about the rules; that it was a life or death matter for me AND for my son. And yet, I STILL had to get a doctor’s note to give them so they could have it on file as if I were a school girl.