My unspoken disability

Growing up, my physical issues and emotional issues were never recognised or discussed. It wasn’t so much that I was silenced, I knew not to talk about it.

After my hospital and physiotherapy appointments nothing was ever discussed either. It was assumed I would go and that was it. It would be like losing a loved one that loved one never being spoken about, never existing.

When I first found out that I had cerebral palsy at the age of 46, I mentioned it briefly so that all my family were aware I knew, then it went back into the shadows. I was just expected to get on with it.

Even to this day, my disability is never out of the shadows. It’s like the elephant in the room. Everyone knows about it, they know it exists, they know it’s there, but it’s never spoken about.

The only time I discuss or mention it is when I blog about it on the site. It is a part of who I am. My disability should be spoken about because it exists.

30 Jul, 2017

8 thoughts on “My unspoken disability

  1. Yes, your disability should be spoken about since it isn’t something that you have to be ashamed about, which is the impression I get when you speak about your childhood.

    I really have a hard time understanding why people feel that way about issues like Cerebral Palsy, since it isn’t like you chose to be this way. We shouldn’t have to feel ashamed about talking about our conditions, which seems to be the mindset for a lot of people.

    It shouldn’t matter what culture we come come from or what our background happens to be, seeing as they are treatable conditions just like any other medical ones. They talk openly about things like Diabetes, so why shouldn’t it be the same for things like Cerebral Palsy or mental health issues?

    It is just such a shame, because so many people suffer in silence, too ashamed or embarrassed to talk about their conditions because of stereotypes and people’s ignorance. This was one of the many things that kept me from getting the help I needed when I did.

    I could have been spared a lifetime of pain and suffering if only I would have felt like it was okay to open up about what was really going on with me. I’m sure that you have felt those same kind of feelings where your quality of life could have been so much better, had you known about what you were dealing with.

    They don’t make fun of people who have things like cancer, so why shouldn’t we get treated with the same amount of respect as they do? The world would be such a better place if we could take so many issues out of the shadows and into the light of day.

    1. Yes, thank you Randy. I think your last sentence sums up your response beautifully. Yes, I too believe the world would be such a better place, if the many issues we deal with were taken out of the shadows, including what you had to deal with.

      I think that because my Cerebral Palsy was mild, they didn’t have to talk about it, but I do think you’re right, people are both ashamed and embarrassed. Being born in the 60’s I think this is exactly what it was.

      You’ve hit the nail on the head.

  2. Your Cerebral Palsy should have been spoken about and you should have been encouraged to talk to your family and express your feelings about it.

    Unfortunately, they decided it was ‘better’ not to and that is something they will have to resolve, not you. Disability should also be openly and honestly discussed, for another reason; as that is the only way people can understand and overcome prejudices.

    As Randy questions, what is different about a disability?

    1. Yes, of course. Thank you and you’re right. Talking about disability allows us, the world to overcome prejudices, but not enough is being done in Society. Individually, we also don’t go far enough to bridge that gap.

      Sadly, you only have to turn the radio or t.v. on and we here more about prejudices around disability and gender. It really is sickening. This was a very tough blog for me to write.

  3. My Diabetes is why I didn’t have many friends in school. Just one great friend. She told me years ago, the reason was because I had Diabetes and everyone was afraid I would flip out, or something on them. That became such a stigma.

    No one ever mentioned it outside of my family and I was treated differently by others. Yes, your Cerebral Palsy should have been discussed. I think back then that generation had a lot of preconceived notions about illnesses or conditions and talking about things wasn’t something they did.

    But we are changing that and I think you’re doing a great job with it.

  4. Awww thanks Lisa. Yes, you’re absolutely right about that era, but in my own case when I later found out in my mid 40’s that I had Cerebral Palsy and told my father, he said ‘he didn’t want to know.’

    Cerebral Palsy isn’t an illness the way I see it, it is very much a condition, that is managed, that needs to be talked about, because it affects all family members including siblings. There is no excuse for any of it, for yourself too being treated differently.

    Sadly, in school a children’s lack of understanding of what other children deal with is very much to blame and that’s down to the parents, but as long as the parents discuss and talk about things concerning other children, there is no reason why all children can’t embrace what other children deal with.

    On the contrary had you blacked out due to problems with your Diabetes, it would have been important for one of your school friends to help you before adult help came.

    I am pleased that at least your family discussed your condition with you Lisa and that you got the emotional help.

  5. I do not understand why the subject is so taboo, especially since your body explains what is very obvious. I feel so uneasy about that.

    Nevertheless, you’re like magic the way you have endured people with two faces and became the person you are today.

    1. Thanks Tim. Yes, my inner thoughts allowed me to see the bigger picture on my circumstances and that’s how it continued.

      As my struggles continued, my thoughts over the years continued to protect me. I hate to use the word ‘abuse’ because of its connotations. But people will always draw their conclusions of my circumstances, whether I use the word or not.

      Perhaps if more of us were accountable for the way we deal with us, our lives, and other people’s lives too, the world would be a much better place.

      Even through my own insecurities I found a way not to inflict those on my children.

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