When Caregivers Make Shaming Comments About My Weight as Someone With Cerebral Palsy

I am a person with a disability. I have cerebral palsy and am an amputee as well as being a wheelchair user. I also have an intellectual disability. I cannot transfer, so I must be lifted in and out of cars, restrooms, etc. So, this being the case, I have had to rely on aides and family to lift me.

• The Mighty’s Caregiving Toolkit

Over the years, my weight has fluctuated. I have gone on diets twice; once I was successful, but the last time I wasn’t. Eventually, I changed my lifestyle and have been vegetarian for the past three years. I love to eat healthy most days. I do enjoy some junk every now and then. I have had issues with body image and how I see myself. However, I am in a good place with that at this point in my life. That’s not to say I don’t still struggle; it’s a work in progress and it always will be.

I have had two different personal care aides over the years, one for 10 years. My most recent aide has been my aide for about four years now. The one thing they have both said to me at one time or another is, “Either I am getting weaker, or you’re getting heavier.” Recently, my current aide said this — and mind you, she knows my history with my other aide and how I felt about myself for years. I don’t think she said it to be malicious; it was more of an off-handed comment.

I said, “I am sorry,” because that has been my go-to response whenever an aide or family member makes a comment about my weight. I immediately go to that because I feel like it’s my fault, even though I know it’s not.

This time, when I apologized to my aide, she replied, “What does it have to do with you?” My mind was blown! In my mind, it has everything to do with me! How could it not? If not, why say that knowing how sensitive I am about this topic? When people do this, they’re pretty much saying I am fat and need to lose weight. If you were in my position, wouldn’t you feel offended and hurt by comments like this? I would rather have a conversation instead of this constantly being said to me for years. It makes me question myself and my self-worth.

Another comment I heard from my dad when we got my first accessible van was, “I am so glad we have this now.” I interpreted that as, “Thank goodness I don’t have to lift you anymore.” That might not be what he intended, but that’s where my mind went.

In society people with disabilities, visible or invisible, have enough to worry about, whether that be accessibility, employment, or their own struggles with their disability. We don’t need caregivers or family members making comments to make us question our self-worth as individuals. We are enough just as we are.

I think people do this because they don’t want to have hard conversations. They don’t know how, and they think this is a good way to approach this subject. Or possibly they’re just trying to be hurtful. Either way, it’s not OK for something like this to ever happen to you. Everyone’s weight fluctuates, disabled or not. I think if able-bodied people had this done to them, they would understand how upsetting it can be. We don’t need to change — society needs to accept us as we are.

I may or may not be getting heavier, but your words hold more weight.