I Have Personal Care Aides to Help Me, But I Still Deserve to Be Treated Like an Adult

I am a person with a disability. I have cerebral palsy, I’m an amputee, and I also have an intellectual disability. However, I am still an adult. 

I am 33 years old and am still living at home, but I also have two fulfilling jobs and an active social life. I am very much my own person with my fair share of accomplishments and dreams for my life. 

I am a person who happens to need help with things like bathing, dressing, and transferring, so I have had to rely on aides all my life — both at school and at home. The one constant thing with my home health aides is that they seem to forget that I am my own person with my own schedule.  

For example, I had planned a birthday party a few weeks ago, and my current aide had known about this event for a week. However, a couple of days before the dinner, my aide told me that I had to be home at a certain time because of her schedule. The night of the dinner party, I was out later than expected because life happens. Meanwhile, my aide had left work. Luckily for me, a friend was willing to not only help me in the bathroom, but they also were nice enough to get me into bed when I got back from the birthday dinner. 

On the car ride home from the party, though, I was scolded like I was a child and was told that this situation could have been prevented if I had told my parents about the time that we needed to be home.  

The next morning, my aide asked me why I didn’t tell my mom that I had to be home early. I then apologized and explained my reasoning. I feel like I always have to explain myself to my aides — no matter who they are and what the situation might be. 

When I want to hire a new aide, my parents — especially my mom — will try to do the hiring. Often, after they are hired, my aides will ask my mom before doing anything with me, even though I am one of the aides’ clients.

Recently, it was also brought to my attention that a new aide was being told that I have the mind of “an 11-year-old stuck in an adult’s body.” This felt offensive to me — both because of who said it and the fact that they have seen that’s not the case. It was an assumption — one that a lot of people with disabilities hear — and I’ve shown throughout my life that it’s not true. I’ve accomplished a lot with my disabilities, and I also act like an adult.

I think what parents and caregivers need to understand is that no matter a child’s disability, that child will grow up to be an adult, and they may be independent. Kids with disabilities will grow into adults with goals and accomplishments — so please try to see that.