I get some questions about what it’s like living with a disability, and I plan to address those as well as share my thoughts on the disability community.
A question/comment I might get is Why are you in a wheelchair. I was born with a disability called Cerebral Palsy, which is caused by damage to the brain and made it hard for me to get oxygen at birth. There are multiple types of Cerebral Palsy, and they affect people in different ways. Cerebral Palsy caused my muscles to stiffen and my leg muscles to not work properly.
Another question people might ask is, can you catch Cerebral Palsy? Cerebral Palsy isn’t a sickness that you can catch. Cerebral Palsy is a disability that I’ve had since birth.
A common thing that I’ve seen people do is that some people tend to treat people with disabilities like we are younger than we are. This happened to me in school, and a school aide always talked down to me. Before I decided to approach her and explain not to treat me that way, she had already quit. Please treat people with disabilities like how you’d like to be treated.
I don’t understand why people tend to group people with disabilities together. For example, in high school, I took a life skills class, which was fine. I enjoy learning life skills. The issue was that I had to leave 10 to 20 minutes early to catch the bus before the last bell rang at 3:25. People might respond Couldn’t your teacher explain what was coming up ahead of time? My question would be: Why was I being treated for something I can’t control? I would have liked to have stayed the extra ten minutes of school like everyone else. This happened throughout high school. I would have liked to be asked, “Would you like to go home a little early or stay until the last bell?”
Does anyone relate to this? What are your thoughts regarding people with disabilities? Please feel free to comment below. If you want to reach out to me privately, please visit the contact me page on the homepage.
If anyone is interested, I’m thinking about posting an unfiltered version of this post to share more in-depth details on this topic. Please let me know if you’d be interested, and if I get enough responses, I’ll post the unfiltered version with more details on my thoughts.
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Elliot, thank you so much for sharing your thoughts and personal experiences about living with a disability. As I read your article, I found myself relating to so many of the things you discussed, especially when you talked about people making decisions for you, talking down to you, and treating you as though you weren’t capable of knowing what was best for yourself.
As a totally blind woman who also has a hearing impairment, I have experienced similar situations throughout my life. And let me tell you something, Elliot. Just because someone has a disability does not mean that person should be treated like a child, talked down to, or expected to go along with everything that staff members, caregivers, or program directors decide.
I remember attending an adult day program in Stone Mountain, Georgia, where I experienced some very frustrating situations. One of the biggest problems was that the staff didn’t always take the time to understand my individual needs, interests, or preferences.
For example, whenever movies were part of the activities, I wasn’t particularly interested in participating. Movies have never been one of my favorite activities, especially because I cannot see what is happening on the screen. And when I tried to explain this, the response I sometimes received was, “Well, you can hear it.”
Yes, I can hear a movie, but hearing a movie and actually being able to follow everything that is happening visually are two entirely different things! There are facial expressions, physical movements, scenery, and other visual details that I might miss without audio description. And having a hearing impairment can make following dialogue even more challenging.
What bothered me wasn’t simply the fact that movies were being shown. It was the assumption that because I could hear, I should automatically enjoy the activity.
Nobody bothered to ask me what I would prefer to do instead.
I would have been perfectly happy listening to an audiobook, enjoying some music, playing air hockey, or using a computer with screen-reading software. Those were activities that interested me and allowed me to participate in ways that were meaningful to me.
But when I brought up the possibility of having a computer with a screen reader, I was told that it would be too expensive. I wondered why nobody considered looking into donations, fundraising, or other resources that might have made it possible.
Instead, I heard explanations about how they had to accommodate everybody and couldn’t just accommodate one person.
Elliot, that statement really bothered me because accommodating people with disabilities does not mean treating everyone exactly the same way. It means recognizing that different people have different needs.
And I experienced similar situations years earlier when I attended a Saturday program in New Jersey.
Again, movies were among the activities, and again, my personal preferences weren’t always taken seriously. I wasn’t asking for the entire program to revolve around me. I simply wanted the same opportunity everyone else had to enjoy activities that interested me.
There were also times at programs in New Jersey when I became frustrated with doing the same activities repeatedly, including going to the same restaurants, watching the same movies, and performing repetitive workshop assignments.
When I expressed my dissatisfaction, I sometimes heard, “Well, if you don’t like it, stay home.”
But why should staying home have been my only alternative?
I wanted to participate in the community! I wanted opportunities to socialize, learn new things, develop friendships, and enjoy myself. I simply wanted some variety and the opportunity to express my opinions without being made to feel that I was complaining.
Another situation at the Stone Mountain center involved morning religious devotions. Sometimes those sessions lasted approximately two hours, leaving very little time for other activities before lunch.
There were days when I didn’t want to participate, but instead of respecting my decision, staff members pressured me to remain. I was also told that I couldn’t leave without someone accompanying me.
I understand that facilities have responsibilities concerning safety, but there is a difference between providing reasonable assistance and making an adult feel as though she has no control over her own decisions.
I also experienced hurtful comments and exclusion from other participants. There were times when I felt unwelcome at certain tables, and when I tried to explain my concerns, I didn’t always feel that staff members were listening to my side of the story.
Those experiences were especially disappointing because these were programs that were supposed to provide support, understanding, socialization, and opportunities for people with disabilities.
Instead, there were times when I felt misunderstood, dismissed, and treated as though my feelings didn’t matter.
And that’s something I believe we need to talk about more openly within the disability community.
We often discuss discrimination from people who don’t understand disabilities, but sometimes the very places that are supposed to support us can also become places where our voices are overlooked.
I have learned that being physically present in a program or community setting doesn’t necessarily mean someone is being meaningfully included.
True inclusion means having a voice, being offered choices, receiving appropriate accommodations, and being treated with dignity and respect.
It also means understanding that adults with disabilities are still adults. We have our own personalities, preferences, interests, beliefs, boundaries, and opinions.
We are not all going to enjoy the same activities. We are not all going to agree with every decision. And we should not be labeled difficult or uncooperative simply because we speak up for ourselves.
Elliot, these experiences are among the reasons I became so passionate about disability advocacy.
Through my Disability Awareness Advocate page and my writing, I want people to understand that disability does not take away someone’s humanity, intelligence, individuality, or right to make decisions.
I believe that staff members, caregivers, educators, and service providers need to listen more carefully to the people they support instead of automatically assuming they know what is best for them.
And I also believe people with disabilities should be encouraged to practice self-advocacy, express their concerns, establish boundaries, and participate in decisions affecting their everyday lives.
We deserve more than simply being placed somewhere and told what activities are available.
We deserve meaningful opportunities, accessible environments, genuine friendships, personal growth, and the freedom to make choices.
I especially appreciated your willingness to speak openly about your experiences with cerebral palsy. It takes courage to share situations where you have felt disrespected or overlooked, particularly when those experiences involve people who were supposed to be helping you.
And yes, I would absolutely encourage you to write that more detailed, unfiltered version of your experiences!
Sometimes the stories that are the most uncomfortable to tell are the very stories that need to be heard.
People need to understand what can happen behind the doors of schools, workshops, adult day programs, and other disability services. They also need to hear directly from the individuals who have lived through those experiences.
Thank you again, Elliot, for using your voice and sharing your perspective. Although our disabilities and personal experiences may be different, I believe we share something very important: the desire to be treated as human beings first, with dignity, respect, independence, and the right to be heard.
Please continue writing, speaking up, and advocating for yourself and others.
Our disabilities may be part of who we are, but they do not give anyone permission to take away our choices, silence our voices, or decide that our opinions don’t matter.
Every person with a disability deserves to be heard, respected, included, and valued. And that is something I will continue advocating for as long as I have a voice.
Thank you for reminding us why these conversations matter so much! ❤️♿
Such a great post! Thank you so much for sharing your experiences with having Cerebral Palsy. Yes, having people not understand and talk down to us is rough to put it lightly. It makes me super appreciate people who talk to us as equals!
Thank you for the comment. I’m glad you liked my post and found it relatable. I just don’t think people talk about things like this, and I have a lot of experience with it. I’m glad that I’m not alone dealing with these issues. I recently posted an unfiltered version where I share more of my thoughts on this subject.
Thank you for sharing this . Sometimes we all need reminders of all disabilities and what daily challenges they can bring. I understand and appreciate your perspective on everything.