Someone Like ME

When you are a disabled kid living in a small town, the chances of seeing someone else with a disability is rare. The only time I saw someone like me was when I went to the hospital for therapy or doctor’s appointments. This was both an advantage and a disadvantage.

By not being around others with a disability, I really didn’t notice I was different. I was occasionally teased, but generally, I was accepted by my peers and included in their activities. However, there were times when I did feel left out, like when they would go for a bike ride and I couldn’t go because I didn’t know how to ride a bike. I did learn how to ride a bike later, thanks to neighbor friends teaching me. This made my father cry because he always wanted me to be able to ride a bike. My father tried to teach me a few times, but I got frustrated and gave up.

 It wasn’t until I got into high school that I saw someone else with a disability. He and I both had Spina Bifida and were both able to walk. We didn’t have any classes together, but we would say hi if we passed each other in the hallway.

It really wasn’t until I was an adult that I was around more disabled people. After graduating from high school, I worked at a school for multiply handicapped children (that was the terminology at the time) and I also worked at a local Arc (formerly A.R.C.- Association for Retarded Citizens) over the summers. While working at the school, I became friends with a co-worker who was deaf. We would hang out occasionally after work or on the weekends. After he left the school, I didn’t really hang out with anyone with a disability.

 Years later, I ran into someone else with Spina Bifida. We knew of each other because my parents had counseled her parents when she little, but we never really had the opportunity to get together.

After reconnecting, we would talk on FB and began to become good friends. Once in a while, I’d go over to her house to visit. In the beginning, when I would go over to her house, I felt very uncomfortable. I had never been around someone in a wheelchair and wasn’t sure how I should act around her. Should I open doors for her? Should I push her? What do we talk about?

After visiting a few times, I confessed I had felt uncomfortable around her because of the wheelchair. She told me I shouldn’t feel uncomfortable around her. She said if she needed help with something, she would ask, but other than that, she would prefer to do what she could on her own. 

I have read things on FB and watched videos on YouTube where disabled people are trying to find a place where they belong. Some have birth defects and other have become disabled later in life due to accidents or injuries. For people like me, who live in the middle of nowhere, social media has opened up the world to us. It helps us to be able to talk to other people with a disability, especially the same one we have. Being able to talk to someone who has the same issues allows us to de-stress or vent to someone who gets it.

We all just want to fit in no matter our circumstances. However, there are certain things that only someone else with a disability will understand. Thanks to social media, it is much easier to talk to others about common issues.

Have any of you ever felt left out due to your circumstances? Please feel free to share your experiences and tell us how you dealt with it.

           

My Fear Of Public Speaking

Although this is not technically a disability, it can be very paralyzing for some people. What am I talking about? Public speaking, which I have heard is the #1 fear people have. It is feared even more than death! I can believe that. I have always had a confidence issue and public speaking is very hard for me. Thankfully, it is rare that I have to do it, but when I do, I get extremely nervous. I stutter and stammer, do a lot of and um-ing and ah-ing to the point where I lose my train of thought and sometimes freeze. The same thing has happened in the past when I have sung in church.

Recently, I was asked to give a presentation on some of my interests by the director of our local Office on Aging and Disabilities, for their Disability Awareness Day. Although I was apprehensive about doing it, I decided to push myself out of my comfort zone and said yes. Now it is a matter of organizing my thoughts and developing them into a cohesive manner.

I was talking to a friend of mine about this, and she suggested that I look into an international organization called Toastmasters. This organization brings people from different walks of life together and helps them develop and or improve their public speaking skills. This is done by members/participants listening to each other’s speeches on a variety of subjects. At the end of the meeting, constructive criticism is given by selected members to allow people to get information on what they need to work on to improve their communication skills.

I enjoyed attending the meeting last night. Everyone was very welcoming to me, cordial to each other during their speeches and were respectful toward each other during the critiquing part of the meeting. I look forward to attending more of these meetings to work on improving my public speaking and communication skills to help me be more at ease when it comes to interacting with people. I will add more posts on this subject as I go through this process. Has anyone else done any public speaking? How did it go? Can you share any tips with us?

Social Discrimination

 U.S. Government and Social Media

Wow. I just read an article on Facebook by the site The Mighty, a site to inform and empower those of us with disabilities. The article I read stated that the government now wants to look at our social media pages as a way to determine whether we are “disabled enough”. This is horrifying.

As I read this article, I began to think about what I post on social media. I post pictures of myself taking part in races with my handcycle. I love using my handcycle. It keeps me physically and socially active. It also gives me a sense of accomplishment and pride, which everyone likes to feel. Am I going to have to stop posting these pictures for fear of losing my disability benefits?

I agree that the government needs to monitor who gets Social Security Disability, but as a person with a disability, I find this proposal very invasive. Just because we are disabled doesn’t mean we have to stop living. By looking at my social media page, it looks like I am quite active and have fun, which is true. However, what my social media page does NOT show is now badly I hurt after physically exerting myself. The reason I do this to myself is to keep myself active in all ways so that I don’t become completely isolated from the world around me.

A couple years ago, I was sent several packets of questions by Social Security asking me question about my functionality. One of the questions wanted me to explain what I do from the time I get up to the time I go to bed! This varies from day to do depending on how I feel and what I have planned for that day, (just like everyone else.} What this question didn’t take into consideration was whether I woke up hurting, whether I might be nursing a pressure wound from simply walking too much one day or the fact that I am mentally drained from someone having to explain something to me yet again because of my learning disability.

I have talked to and become friends with people on Facebook who have similar disabilities to mine, and others who have disabilities different from mine. We all have different abilities and disabilities. This applies to non-disabled people as well. Don’t judge us on what you see on our social media pages. Get to know us and what we go through on a day to day basis before you judge what we are and are not capable of.

As for me, I am only able to stand for about 20 minutes, while hanging on to something, because my balance is off and my muscles start to ache. If I overdo it, my back KILLS ME by the time I am able to sit and relax. This pain can last anywhere from a half an hour to days depending on how much I over exerted myself. Being on disability enables me to do what I need to do and have the ability to take care of myself.

Judging people on the basis of what they see on social media is discriminatory. Not all disabilities are visible and should not be judged as such.

Has anyone else heard about this? Have you experienced this kind of thing yet? Let’s share any information we come across on this subject so we can fight this discrimination!

This is a blatant form of discrimination and it needs to be addressed. I would like to encourage everyone, including individuals with disabilities, their caregivers, even their case workers to contact your state and/or federal government representative to voice your concerns on this subject. Below you will find a link to the article I got my information from and also a link to find your states representatives.

Elected Officials