Epilepsy Talk

Do you consider yourself as “disabled” or a “person with disabilities”? | March 14, 2021

It’s an interesting and provocative question.

One that author Erica Mones brings up in her new article: “I Refer to Myself as Disabled, Because My Disability Is Central to Who I Am.”

I think each of us will react differently and defend our decision in a unique and personal way.

Hence, the reason for this article.

Does your disability define you or are you defined by your disability?

One of my favorite quotes which I came across years ago (I can’t remember where) is:

Disabled = Dis+abled.

And that is where I stand.

See Erica Mones’ argument in the link below and tell us what you think…

 


19 Comments »

  1. I am a person with a disability. However, epilepsy is not that well known in America and with the ignorance of the american society I am a disabled person and a person with a disability they are afraid of.

    Liked by 2 people

    Comment by Graham Raiff — March 14, 2021 @ 10:25 AM

  2. I am a person with disabilities – multiple ones in fact. But I don’t prefer being called a disabled person because I am more than my conditions. They have made me who I am, and I honor that. But they are not my totality. Just like when I have to correct friends for calling me an “epileptic.” Or a “cripple.” No, I have epilepsy. I use a cane. I am a journalist. I am an advocate. I am a strong, powerful woman. I don’t want one word to define me. I define me. But I understand the need to put the word “disabled” to the forefront in a time and culture where the needs of our community are ignored. The one thing I think is pejorative is “differently abled.”

    Liked by 2 people

    Comment by Mary Ellen Gambon — March 14, 2021 @ 10:38 AM

  3. I kind of like the “dis-able” better especially now. However there was a point in time where when I had convinced myself “anything anyone could do, I could do better”. Until I almost couldn’t even bother doing that due to what my health has almost not allowed me to anymore. Now I just stop and let everyone who matters say what they want (hear them) then tell them where I am (physically and almost mentally now) and ask them when they would fit in or want to be called if they were me? It just gives everyone something to think about. In the meantime I will get better and I will be able to do things I used to love to do and want to do!! I just need a bit of a break to adjust to one thing before I jump into another. Therefore I can not necessarily say I am “disable” or “dis-able” because I have to for myself absolutely in the most sincere fashion believe I am and will be again!

    Liked by 1 person

    Comment by Kathy S.B — March 14, 2021 @ 12:54 PM

  4. I think this issue is about WHO IS GOING TO JUDGE US WHO LIVE WITH SEIZURES. It’s almost as bad as THOSE WHO JUDGE US, who watches us & picks out what we do & how we live as a CHRISTIAN who believes in Jesus Christ, and I will not affirm those other ways you get to heaven because there is but 1 way only. So yeah, I am a CHRISTIAN who lives with SEIZURES in my life, and being both of then cancels out all disabling status that the rest of the world puts their labels on me as to what THEY THINK I AM compared to WHAT I KNOW I AM by the approval of Jesus, and as a believer in him, I KNOW 1 day I am going to be healed from ever having 1 more seizure in my life. If that means as my physical body will still have them, then I say COME ON RAPTURE & allow my spiritual body be in control & I can start to live for once with JESUS being right there with me, even as I know he is with me right now & has been with all my seizures I have had for over 60 years.

    Liked by 3 people

    Comment by James D — March 14, 2021 @ 1:57 PM

  5. Epilepsy is not a disability.I have learnt many mathematical symbols ect.ignorant people are the problem.if other people are dumb,why does this make you disabled.

    Liked by 2 people

    Comment by lanceminnis — March 14, 2021 @ 7:38 PM

    • While it may be a disability to some, for myself its an ability that gives me a creative one up. I have been physically disabled before – still am from a legal perspective I guess: when on a construction site, I had a ladder fall, tore every ligiment in a knee dislocation. I reset my knee by myself while waiting on an ambulance. Vein damage, DVTs and pulmonary embolism kept me in a bed for 8 months. It took years to learn to walk again. I was told I would never hike, climb stairs or inclines, jog… But from my bed I recoded and album, and designed a small amplifier that I have sold thousands of, keeping my business profitable. I studied math and chemistry. I leared to walk, climb, jog and hike all over again, none of it for the respect of others… bwahhh haha.. if I was limited to the opinion or recognition of others I would have to slow down and wait for them to catch up. I did it cause’ I wanted to experience more life and because I felt great beating injury back. Expecting others to prop me up emotionally is a fast way to get dragged down – no one ever told me I would get better – they told me I wouldn’t though.

      I never think of identity. I don’t “identify” so to speak. Mixing organic chemisty words that are totally unrelated to the human condition smacks of a special kind of centerdness different from my own narcissism… A need to feel important due to existence alone. In my opinion its a child’s luxury that makes no food, no happiness, no progress, no art or music, and no civil society. But I’m not a dictator. We can all make our own choices.

      If identification is necessary: I am an animal, a member of species of great apes that can kind of make simple tools, speak, and write down what we think. BUT we still live in or under rock and wood… just like a million years ago. We still burn things for heat and light. Textiles are the same as 10,000 years ago…. We call arranged rocks with straight edges “wonders”, yet a pyramid is the simplist rock structure short of a pile that can be made.

      I do realize that different people want different support systems and some prefer next to none. I’m not looking down at people who have complex social concerns. I just hope for their own sake that at some points in life they stop looking inward long enough to look outward and enjoy the blue skies and living paradise around them.

      Life can be about identity.. disabled or not… but living is about what you get to touch, taste, see, feel and hear and the love you share with those you care about.

      Liked by 2 people

      Comment by William — March 15, 2021 @ 11:48 AM

  6. We are not disable. We are all human who are all able in our own way and in our own time. It just takes patience (as we get wiser) to accept that and to learn to overcome it. Or maybe that’s get the energy to overcome it. I’m a bit of a rebel lol and whatever people want to call me they can if they so choose, but in the end I am me and I am unique and I will figure out how to overcome most obstacles or deal with them head on. “DIS-ABLE” is momentarily and allows for the chance to either prove to myself or whomever (if they care or not) that they too can overcome whatever obstacles will be in their future for themselves and loved ones and friends. Ignorance can be overcome as long as we believe we can be the best we can. My children will never learn to overcome anything if I don’t show them they can succeed by succeeding and being the best I can be for here and now and never give up. The rest is up to whomever to decide their meaning to being unable to at the moment, but believe in themselves that they are also able to with time!! The world wasn’t made in a day.

    Liked by 1 person

    Comment by Kathy S.B — March 15, 2021 @ 1:30 AM

    • This is my idea also.I could not ride a bike to school ect. So I spent 15 hours per week working on mathematics,no disability there.

      Liked by 2 people

      Comment by lanceminnis — March 15, 2021 @ 1:35 AM

  7. Good for you lanceminnis don’t give up and keep going 👍🏽

    Liked by 1 person

    Comment by Kathy S.B — March 15, 2021 @ 1:37 AM

  8. I believe with “disable” would would never be able too!! In my mind with “Dis-Able” we will be able to just maybe not all at once, but we will be able to with the help of eachother in one way or another. I too also pray and have a lot of faith and have to simply believe and have faith in myself and all of us, our spouses, children, family and friends and eachother that we all can achieve, care and help eachother to the best we can be with of our abilities so we can all be the best we can and never give up trying. Because sometimes we are all we have here and now. I will crash and burn with a lot of scrapes and cuts but I will and do ride bikes lol 😂 just maybe a little slower now if my husband will let me lol 😂. And one day climb ladders and finish building my gazebo as well 😊.

    Liked by 1 person

    Comment by Kathy S.B — March 15, 2021 @ 2:01 AM

  9. My body has a disability. I do not.

    Liked by 2 people

    Comment by Nancy — March 15, 2021 @ 11:54 AM

  10. Why not accept the term “person with disabilities”? Doesn’t that mean we are faced with a disability and have overcome that obstacle so greatly that you can’t tell we have one? Sounds like a victory!

    Liked by 2 people

    Comment by Ed Lugge — March 15, 2021 @ 12:41 PM

  11. The disability definition is : a physical or mental condition that limits a person’s movements, senses, or activities.

    If you have grand mal seizure than i would consider that a disability. Now if you have those types of seizure that u just twitch a little, then in my mind that is not disability. Since i have grand mal, i definitely limit the things i do, not only for my safety but the safety of others.

    But like someone said above, mentally i do not think i’m disable, but physically, yes.

    Liked by 2 people

    Comment by Zolt — March 16, 2021 @ 4:59 PM

  12. Very definitive and well said Zolt. Thank you for the clarification.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 16, 2021 @ 5:04 PM

  13. I think that the most harmful component is ignoring my needs. Doctors can see from my scans that I have white matter disease, which is a form of dementia, and I’ve had 10 brain surgeries, and my ventricles have basically disappeared. I have a disease that is making my bones fuse together in my spine and hands. And I have another disease that makes my collagen unstable, so my joints dislocate spontaneously; right now I’m recovering from having both feet operated on. I absolutely know I’m disabled and I have challenges. The biggest challenge I have is doctors telling me that I just need counseling. The issues that I’m having with my brain and cranium are actually very rare and it took me 7 years to figure out the mechanism causing those (and I did before the doctors did), but because it’s so rare, even though I have had 10 brain surgeries, doctors now say that it must all be my imagination and I just need counseling. I don’t care at this point if I call it disabled or dis-abled or person with disabilities. I need doctors to stop acting like I can will my brain to change shape and appearance for scans like I’m some sort of magical leprechaun.

    Liked by 1 person

    Comment by akiwifreund — May 13, 2021 @ 5:15 PM

    • They’re the freaks, because they can’t accept and understand what is patently in front of them.

      Ignorance is the biggest disability, so I guess that excludes you. But they’re in the front and running (from you and the problems).

      I’m so very sorry you have to go through this crap. Being so vulnerable and not having those who are theoretically there to help you.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 13, 2021 @ 6:38 PM

      • Many thanks! The plus side is that I am teaching others how to advocate for themselves.

        Liked by 1 person

        Comment by akiwifreund — May 13, 2021 @ 7:03 PM

  14. And that is one of the greatest gifts of all!!!

    Like

    Comment by Phylis Feiner Johnson — May 13, 2021 @ 7:22 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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