Othering and Disability: But… I’m Not Disabled

othering-disability

I am 30 years old. I am tall, relatively healthy, able bodied and apart from what I like to call “the world’s longest list of significant health conditions that affect my life in no significant way” I am absolutely fine.

So why am I writing this?

I am staring down the barrel of a diagnosis that may see me categorised as having Marfan Syndrome, an issue with the connective tissue. A disability.

But… I’m not disabled.

I’m struggling to deal with this. I feel like a fraud. Imagine if someone who had never experienced mental illness came up to you and told you they knew exactly what depression felt like because sometimes they got sad too.

At best a bit naive and at worst a little offensive.

Well, that’s how I feel if I describe myself as having a disability. Or, rather, possibly having a disability. I don’t consider disability a bad thing (and inspiration porn can kiss my ass), it’s just not something I have.

I have friends who have disabilities that impact their lives. But this wouldn’t affect mine.

I haven’t got any impaired abilities. I don’t have to spend days in bed because I suffer from chronic illness, or pop my joints back in their sockets after sex.

In fact this diagnosis would change my life in no way at all – I already have all the conditions diagnosed that have led us to this conclusion. All those things are being treated.

So what difference does it make if I consider myself Marfans or not?

It kind of doesn’t. Except for the label. The fear that I am being insensitive. Being a fraud.

I read a recent article by my friend Carly Findlay (who, side note, has been an exceptional rock for me through this) about Othering and the penny dropped.

Isn’t it funny how sometimes being afraid of something results in doing exactly what you’re afraid of doing?

In my haste not to label myself something other people might consider offensive, in my haste to be considerate to those who have a disability, I’ve ‘othered’ those who do fit that label. I’ve said: But they’re not like me. 

Only they are. They’re just like me. They just accepted the label.

Have you ever struggled with a label? Have you ever struggled with a diagnosis? 

  • Gary

    I think you can live your life with the diagnosis in the back of your mind and others don’t need to know. The only time it’s an issue is when you are unwell and doctors who are not familiar with your medical history, especially if you’re overseas, need to know. It’s worth having it written down in your smartphone’s health app so if you’re ever found unable to communicate the doctors looking after you will know. Otherwise, enjoy everything in life you can.

  • http://www.themultitaskingmissus.com/ Gina Soldano-Herrle

    I’ve definitely struggled with a label before. I have struggled with labels and the lack of them in a couple of diagnoses in the past. But, the biggest label was being the kid whose mom died. My mom passed away when I was 11 and so I didn’t really think of the social or life repercussions at the time other than that she would no longer be around. I didn’t realize that when being introduced to someone the first thing my grandmother would say would be “her mother died when she was 11” from then on. I didn’t realize how my friends would walk on egg shells, particularly around mother-centered days and events. I didn’t realize how often the topic would come up in school and how I’d be different than everyone else. I just didn’t think about these things at the time and as I grew older I decided to just not ever tell anyone. I didn’t want to hear their condolences or have their pity. I know that sounds harsh, but what am I supposed to say when someone says “I’m so sorry for your loss.” It’s not like you can really say “it’s okay” and I most definitely do not want to talk about how much it sucks. So, I’ve been hiding it. For years. Only my friends and family know about this part of me because either they were there or it came up. I avoid the topic of parents with anyone else. I know this seems excessive, but I just don’t want to be looked at like a lost puppy anymore.

    • http://kikiandtea.com/ Tamsin Howse

      I can understand that desire, what an awful label to have. I’m surprised you were introduced to people like that, that seems really insensitive.

      • http://www.themultitaskingmissus.com/ Gina Soldano-Herrle

        I was shocked as well. I tried to explain that it’s not exactly the first impression I want to make on anyone. And yet, adults tended to think that they knew best.

  • Andrew Collins

    I have depression and PTSD, and have a documented permanent 30% mental impairment stemming from being raped by multiple teachers and priests as a child. I will never be able to work again as I had a breakdown, and now I have no way of knowing if the next day will be one where my mind will work ok, or if the black dog will take a hold and I will not be able to get out of bed or concentrate, or even go out in public. I meet the criteria for being disabled. But when I look in the mirror I don’t see that person. I am an advocate for other victims and I have accomplished so much in the last two years that I probably get more done overall than most ‘normal’ people. I enjoy spending time with my children. I appreciate the sun on my face, a good coffee and a good cake. I have learned to enjoy moments, and I appreciate every good one, and have learned to sit with the bad ones, treating them as just a journey to the next good one. Labels are just that. We are who we want to be and who we think we are, not who others think we are. I have followed your blogs for a long time now, and you are amazing. You could have no arms or legs and you would still not be disabled, because you are a caring intelligent person. Nothing that happens to the body you inhabit will ever change that, and I hope that you never let it change.

    • http://kikiandtea.com/ Tamsin Howse

      Thank you so much! You’re pretty amazing, yourself, especially considering everything you have been through!
      I don’t think disability is as bad as you think it is, mind. My friends who are disabled are pretty amazing themselves.

  • shelie

    Only just reading this now. Not sure what to say! Beautifully written, though. Good luck with this journey.