At my meeting last week, our leader brought in Dunkin Donuts-my ultimate favorite junk restaurant! However, my grandparents left so that I could enjoy myself. Somebody offered me a donut. I turned it down because I couldn’t eat by myself. I didn’t want to make a mess of myself. Well, a nurse who was with another man in a wheelchair offered to feed me. I was shocked somebody offered to help me.
I guess when you’re in that kind of environment, nobody cares what you can or cannot do. They just pitch in and assist you. It’s just good to go somewhere and know the people are understanding and good to you in a nurturing way. Don’t get me wrong; a lot of people are nurturing to people disabilities, but I just feel accepted, included and supported in my group. Nobody excludes me because of my condition. So what if I can’t walk, talk or control how I move at times? They accept me just as I am.
Sara Pyszka is an advocate for people with disabilities. She is an incredible young women with cerebral palsy. Although she has a disability that affects her speech, similar to mine, she’s very bright and is able to communicate via Dynavox.
Apparently, she was on an online dating service and somebody asked her if she could even have a relationship.
I’m reading it and I respond, “Somebody will date you. Just have faith and wait =]”. I’ve come to believe that there’s somebody for everybody. If somebody asks you a similar question, they’re the ones who shouldn’t be dated.
Time and patience are key for waiting for relationships. Trust me, somebody will fill your empty heart.
Last night, I went to my September meeting for my support group. This month, a famous iron man triathlete from the Northeastern United States came to the group to discuss how to stay out of nursing homes. The guy was paraplegic and he had lost hope of living because he was born with no disability and later lost the use of his legs in an accident.
This man had been gaining weight since his paralysis. Knowing that weight gain was a danger to a person in a wheelchair, he began racing up and down his neighborhood to get his exercise. Somebody saw him racing on his block one day and asked him if he’d like to do wheelchair racing marathon. At first, he declined the offer, thinking that he was in no shape to race. Long story short, he was encouraged to do the racing and he did. He’s now an iron man triathlete.
Today, he advocates for paraplegics to stay out of nursing homes and live independently. Everybody should be able to live comfortably at home and if they need in-home care, that should be provided. Nobody who can at least work or care for themselves to an extent should be in a nursing home. Nursing homes are just another way to censor our voices in our society.
A lot of people with cerebral palsy have increased body movements. The increased body movements for me result in stress or strong feelings such as anger or happiness. I’ve been taking a medicine to help me primarily use my hands better along with gaining better control of other things.
One of the side effects of the medicine is increased anxiety and I started having increased body movements. I went to my doctor and he took me off the medication, thinking it was just the medicine causing it. I stayed off it for a few weeks, but the movements still occurred. So I went back to my doctor and I told him they weren’t stopping and that I started having negative thoughts about myself. Since I had these thoughts about myself, he referred me to another doctor to talk to about my problem with.
The two doctors met recently to discuss my progress about 3 months after stopping my medicine. It turns out that it wasn’t my medicine causing my increased movements and there were enough psychological evidence to prove it. So my doctor put me back on my medicine and ever since I restarted it, I’ve been feeling great. Hopefully, the increased movements have stopped for good.
If you or somebody you love experienced a similar problem, get medical help. There are treatments to help you. I thought my life was over when my problem started to occur. But please note there are treatment options to get you through this. I strongly recommend looking for a rehabilitation hospital to treat such a thing and if you get the right doctors, you’ll definitely get better. Trust me, physiological issues are treatable. You just need to get treated.
I’m shadowing a disability advocate and one recent issue that we are advocating for is more accessible voting booths for people with all kinds of disabilities. Believe it or not, voting rights are not 100% equal. People with disabilities still face discrimination at the polls because of difficult-to-use ballots, no trained poll workers to assist the disabled, no voting education offered to the disabled and no transportation available for people to be taken to vote.
Let’s make every effort to make future elections easier for a citizen with any disability to voice their opinion. All the states need to educate people with disabilities how to use the ballot, have personal assistants assist the people they care for in the voting process in a non-persuasive way, educate new voters about the candidates and provide transportation to and from the polls. So this year, let’s even out all voting rights for our fellow citizens so that they can have their voices heard.
I get not everyone who encounters somebody with a disability knows how to react or talk to the person with the condition. Some people get nervous when they meet somebody in a wheelchair or a deaf person and that’s okay for the first time. Eventually, they will get to know the person with the handicap and have an easier time associating with them.
But there’s one thing people should never do to anybody with any disability and that’s staring. I don’t care if the person in the wheelchair or the deaf person is 5, 10 or 60. Staring is wrong, period.
Here’s a weird story about my past.
I went to a middle school where they had something called advisory. Advisory was a 17-minute long period for 6th, 7th and 8th graders to hang out. I had kids in my advisory who obviously had no knowledge of cerebral palsy. Okay, yes, as time went on, they started to understand my disability. Most of them anyway…
As we got older, the girls from advisory got better at understanding my disability. But one person, as they got older starting staring at me in school. The person never stared at me in middle school. Never. But as an older person, they did. I recently saw the same person, and they still stare at me. Why would somebody who knows someone like me stare at me? I’ll never understand that way of thinking.
My message for today is never stare at anyone for any reason. If you have a question about somebody’s disability, go up to them and ask them. Don’t hesitate to ask the person with the disability what their disability is directly. If you ask them and they don’t understand, then go ahead and ask their caregiver. But don’t stare. Staring is just another form of underestimation and underestimation itself needs to stop.
My first two days back at school went smoothly. All my professors are really nice and they seem acceptable of my disability. They all will give me time to participate in class. I know at least one person in each of my Tuesday classes, but I know nobody in my walking class except the professor. The students in each of my classes seem very nice.
I was a little concerned about transportation because a different ambullette service would be picking me up from last year and I didn’t know how nice the drivers were because you never know how some of them will treat you. Fortunately, my drivers both days were very nice. Unfortunately, I don’t know who’ll pick me up the next ride to or from school so that worries me. Let’s just pray for the best.
I just would like to wish everybody a good and successful school year. I’m sure everybody is nervous about returning to school, but a good education is essential to a bright and successful future. Just remember one thing-good grades are important, but making every effort to get good grades is more important. It doesn’t matter how smart you are. You just got to do your best. Nobody can ask more from you than that.