How do we respectfully write about people with Cerebral Palsy?


Recently, I posted an article on our facebook page about a young comedian, Jack Carroll, who has cerebral palsy and auditioned for the show Britain’s Got Talent. In the article, Jack was introduced as a “sufferer of cerebral palsy.” Beyond the content presented in the article, a discussion ensued on our facebook page about how language influences the perceptions of people with disabilities. There were a variety of perspectives presented from individuals with CP and parents of children with CP.

So what is the right way to respectfully talk about people with cerebral palsy or any other disability? I become increasingly challenged by this question both in person and in writing. Now that I am the parent of a child with a disability and the host of a website about cerebral palsy, the stakes are higher for me to get this “right”. And, I am finding that determining whether an article or speech respectfully describes a person with CP or any disability often lies in the subtleties of the description, not only the words used, but the intention behind the words.

I am reminded of a conversation I had with a very good friend of mine, Kelly. Her daughter has a genetic disorder and attended the same therapeutic preschool as Maya. The founder of the preschool was Dr. Leslie Meyer, an incredibly forward thinking and generous man whose vision for children with disabilities is still progressive within our local community almost 60 years later. He passed away a few years ago. One night Kelly and I were discussing the issue of language as it pertains to people with disabilities.  She said to me, “Michele, Dr. Meyer spoke to me about AK and he said, ‘Kelly she is doing good. She is doing real good. There is nothing worse than a spoiled retarded child.’”

Now, you may gasp in horror at hearing this statement, but consider the context. This is a man, an orthopedic surgeon, who dedicated a large part of his life to establishing a therapeutic preschool school in the 1950s for children with cerebral palsy. At the time his colleagues ridiculed him for thinking that children with CP could learn and should have a place where this would be possible. In the 1950s children with disabilities were not guaranteed an education, so rather than being in school most kids with CP stayed at home. Dr. Meyer was in his 80s when he passed away. It was part of his life’s work to support the CP community and he had the deepest respect for our children. He used the term “retarded” as a clinical reference because his generation of medical professionals used it that way. Had Kelly, or any other parent become distracted by his language faux pas, she would have missed out on the wisdom and love he was conveying. He was relaying the importance of setting boundaries and respecting children with disabilities by treating them with the same respect and guidance you would offer a typical child.

I feel terrible when friends, family and strangers struggle to find words not to offend Maya or me when they ask questions or discuss cerebral palsy. I want to encourage conversation, yet I wonder how many people avoid eye contact and conversation because they worry about not finding the words that won’t cause offense to our family. Sure, there are some well known blatant language offenders such as the “R” word that have been widely broadcast as conversational “no- nos”, but there is no layperson’s guide book of the most appropriate and respectful ways of navigating these conversations. Who you offend and how you offend them can vary from one individual or family to the next, regardless of your intention. How we evaluate the use and abuse of language to illustrate one’s intentions is a tricky matter.

In journalism I understand there is some professional guidance on the appropriate use of language, which, in the case of the article referenced above, may have been ignored. Perhaps in the mind of a journalist, describing someone as a “sufferer of a disorder or disease” makes for a more dramatic or more appealing story. When I saw this phrase I stopped reading because it bothered me but I wasn’t sure why. I tend to try and focus on the overall content being presented, but still, this phrase didn’t sit comfortably with me. After I finished the article, I thought about it more intensely. I decided that it wasn’t necessarily incorrect to say that people with cerebral palsy suffer from pain and other daily challenges. So what was it that made me feel awkward? I figured I would post the article and see if anyone else brought this issue forward, and what they had to say about it.

What I didn’t initially consider was the impact that repeated use of this language has on society’s perception of a particular population. As one parent guided me to see, describing someone as a sufferer connotes pity and victimization, two emotions I definitely don’t want people thinking when talking to or thinking about Maya. Compassion and understanding yes, but pity, no way.

As we navigate these tricky waters as a collective society, I imagine what constitutes offensive language will shift as our beliefs and use of language change. Once upon a time there was nothing inherently offensive about the “R” word. However, over time it was misused, abused, and intended to be insulting, and with that change, the word itself developed an offensive quality.

I think one of the most important aspects of using language that reflects our intentions is to check in with each other and ourselves about how we use language to express our ideas and feelings. If someone says something that hurts you, tell that person how you feel and why. Give that person a chance to understand and learn from what you see and perceive through his words. Not all people will have access to the current thinking about various disability terminology, and people may disagree on what they are, but at the very least I believe we need to get to the heart of what individuals and our collective society believe about people with disabilities/challenges. Maybe one day we will stop categorizing people for the purpose of describing them in general context and use these categories only to diagnose and treat the individual medically and to offer more helpful support/accommodations. Who knows what the future holds as our ideas and intentions shift.

When the timing is right dialogues about disability language may bring understanding, and push us to examine our intentions, ideas, and beliefs, so that we can continue to have language most accurately reflect what we mean. As individuals we all have places within us that are vulnerable depending on our personality, personal, philosophical, and cultural values. In addition, for people with cerebral palsy the degree of the disorder’s impact on their daily lives may affect their point of view. At the core of people’s sensitivity to the use of language about disabilities is the deep desire to feel accepted, respected, and loved.

As I read our followers’ comments below the article describing Jack Carroll as a “sufferer of cerebral palsy” I pushed myself to examine my beliefs, ideas and feelings about my daughter and other people who live with cerebral palsy. My thinking and my use of language shifted from that day. The change didn’t come from a desire to just be politically correct, but from having my beliefs change about the subject. Thankfully the parents and individuals involved in the discussion were kind enough to allow me to process all of this without ridiculing or judging me.


Dartania Emery, an adult living with CP, comments on the this same news article. Dartania felt strongly about the journalist referring to Jack Carroll as a “sufferer of cerebral palsy.” On our facebook page Dartania Emery has offered to host conversations, field questions, and offer insight about what it is like for her to live with cerebral palsy. She helps create understanding without judgment, opens herself up to the perspectives of parents that may contrast greatly from her own, and she isn’t afraid to ultimately share what she feels and believes. Thank you Dart!

Here is Dartania’s perspective:

This description really got me thinking about how and when one differentiates between sufferers of a disability versus people who live with the same disability. When people say that those of us with CP suffer from it, I get a little upset by it. Yes, I might suffer from the effects of having CP but, I’ve always seen myself as living with CP. My grandma taught me to never let the CP get to me. So, I’ve never complained about it. Like I said on CP Daily Living’s Facebook page, “everyone goes through pain – whether it be physical or emotional pain. Whether or not you let that pain consume you, is what makes you a sufferer of that particular pain.” A great majority of the other adults that I know who have CP, are in agreement with me that we don’t suffer from CP, we just live with it. I also take the wording of “CP sufferer” to task because I don’t like for people to feel sorry for me or, to treat me differently because I have CP. I want to be seen the same and treated the same as everyone else.


10 replies
  1. Patrica Malmendier
    Patrica Malmendier says:

    Wow- powerful writing, thank you! As always, I so appreciate your sharing your thoughts, and there is so much to think about here. I do feel that it seems wrong to describe someone else as “suffering from” CP or any other disability. Although a person who was writing about themself might well choose that description if they felt it accurate. I think “challenged with” would have been a better way of wording it. I know one of the most upsetting converations I had about my daughter was with an elderly neighbor who asked me if my daughter’s legs could be “fixed” When I tried explaining CP, her eyes glazed over, and then she abruptly said, “What a shame, she is a pretty girl.” Again, subtleties & context- what she said wasn’t so horrible, especially considering her generation, but I got the impression that my child had just been written off as a ‘pitiful cripple’ and I went home & cried my eyes out!

    • cp daily living
      cp daily living says:

      Patricia, another follower also said she thought it would be fine if someone chose to describe themselves as “suffering from” CP. I don’t know how I would have responded if I had a conversation like the one you had. It’s deeply painful to see and feel that someone is writing off your child. I certainly would have felt sadness, but whether I would have connected with anger first I don’t know. I could see myself saying something sassy back to her initially. Although, sometimes what people say and the timing of it can be so shocking that I can’t find the words. I am sorry that pain went through you.

      Thank you for your ongoing encouragement!


  2. Bonnie
    Bonnie says:

    I feel “devalued” when people express sympathy with terms as “crippled” or “that’s” so sad. We all have burdens to live with,it’s what you do with the load that matters. Make the best of what you have!

  3. April M. Whitt
    April M. Whitt says:

    I very much appreciate the awareness this article brings. I’ve sometimes worried that I wasn’t using the right words or feared offending someone in situations like those mentioned. I’ve even heard recently that someone was offended by the words “special needs” and I was troubled as I am a teacher of students with special needs and I’ve used that term a lot. Language is something of a living thing and is forever evolving. We all need to be sensitive to others and choose positive, life-giving words as much as we can. But I agree, as mentioned, that the person’s intention should always be considered. I think it’s worse to ignore someone,than risk saying the wrong thing. And please forgive me if I’ve said the wrong thing right here!:)

    • cp daily living
      cp daily living says:

      Thank you for your comments April! It’s hard to know sometimes what to say or how to say it. Hopefully we do the best we can and people will engage in dialogue rather than our society or culture approaching a place where people are afraid to speak at all.

      All the best,

  4. Ali @ Super Mario Twins
    Ali @ Super Mario Twins says:

    A little late to the convo, but I just tripped across this and figured I’d share.,%20Our%20Image%208th%20ed.pdf

    I like to use people first language and prefer to say “my son with a disability rather than my ‘disabled son'” I also didn’t realize until recently that the word “accessible” is the preferred term over “handicap” as it relates to seating and parking. I’m a special needs mom and I’m still learning!

    • cp daily living
      cp daily living says:

      Hi Ali! THank you for sharing this. It’s so hard to keep up and to know what the consensus is on some of these things. I even wonder how this list was compiled. Ironically some of the “don’t say” items are used by people I know what have disabilities. We do the best we can and on occasion a good friend of mine has gently let me know when words I have used may be outdated and considered disrespectful now.

  5. Paul
    Paul says:

    Hello. Thank you for writing this. It truly reached me. When I was in elementary school I had a class mate who lived with CP. I moved away but decades later I still think about him and how he taught me about living the life we have. Now I wish I can meet him again and hopefully being friends. I pray he is doing well.

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