What Am I? Musings about labels

I’m actually pretty big on labels. Not in the derogatory, pigeonhole me kind of way. I use them to ground me, to help me remember what’s important to me, what I’ve achieved.

My favourite “labels” for myself are: mum, wife, friend, student.

Some of my others are: auntie, sister, daughter. Generic, ones that a lot of us can lay claim to.

The one I have been avoiding most of my life, because it sounds ugly and because I’ve never known what it means for me: disabled.

Someone queried on a Facebook group how we as people refer to ourselves – disabled or impaired? My instinct was “disabled”, but I had to think about it. I don’t actually like the word, so why do I use it? The answer is, because it was just the word that used when I was growing up in the 90s/00s.

I’m not offended by it. I have just never liked it. But until I was faced with the question, I had never considered why. But I think I have it.

DIS-abled.

Negative connotations. NOT able. It discounts any ability you have as a person, because your difficulties and your shortcomings come first. It’s such limiting language. I think it feeds in to my most loathed of words. Incapable.

Again, NOT capable. That is a message I took so to heart in denying my disabled identity. But where’s the sense in that denial, truly? I will never not have these difficulties. I will never be willing to say that that in itself isn’t unjust. I didn’t ask for this, and it is a burden. Disabilities aren’t bestowed as a test of strength or character. That’s just what they become, because there’s no getting round them once they’re there. There’s no cure out there is there? You just have to live with it as best you can.

Some people identify as a person with disabilities. A person before disabilities. I admire that. I do. But I can’t use it myself. Because using the “with” suggests that I am at peace with my situation. I’m not. I’m better, but I’m not “with” disabilities. I’m still stuck with them.

I watched Disability & Me, a documentary by Alex Brooker and he made a lot of sense to me. It is obvious he has struggled, he’s denied those struggles as I have, but he found strength in his children. He wanted to come to a place of acceptance, in order that his precious babies be able to do the same. This is where I am at.

I am not on the other end of the spectrum either. Those that feel empowered by their differences. I admire that too, but I find people are keen to share that mindset and I’m afraid I’m not open to that. Not because they’re wrong, not for themselves. But they are wrong for me, just as I would be for others.

I have found strength in my negative emotions being validated. Having someone else say “I find it hard too. I’d like things to be different” has almost released that pain in me, because it has made it OK to say. I was never allowed to release that voice before. Others would tell me to be grateful that it isn’t worse for me. But that kind of demand doesn’t make the life I’m living any easier.

I was beat down by that mindset, feeling guilty by being so at odds with it. I feel stronger now. Because my voice is true and it needn’t be diminished.

I wish I could control the label assigned to this part of my identity. Some would say I should actiely control it. I probably could. But more than 30 years of being “disabled”, I’m not sure I could suddenly insist, even to myself before others, on being “impaired” instead. It seems a kinder word somehow, less definite than disabled or the dreaded “incapable”.

“Impaired” doesn’t encroach on my achievements. It just says some things are harder. And they are. They always will be, but it doesn’t mean I can’t achieve alongside them. My children are proof of that.

And other labels have thankfully died away. It is no longer acceptable to call people with my struggles “spastic”, for example. Not that I’m implying the word “disabled” is offensive, and certainly not to the same degree. However, I do think, now that I’ve allowed myself the time to consider it, that, as a label, the word “disabled” does not reflect what we are in fact capable of.

I will never be free of my disabilties. I don’t know how they will change as I age, or how they will affect my life. However, I am not consumed by it. My disability is not all I am. That is why my other “labels” are important. Because that one, that one that is supposed to define me, does not.

I also considered this blog. If I’m not happy to identify as “disabled”, should that even be the name of this blog? But you know what, yes. Because I am trying to reach a society that otherwise doesn’t seem to know I’m here, so I have to use the lanuage of the norm. I’m not sure “Impaired Mummy” or “Mummy with Impairments” would do it. Besides, I am here, to emphasis the ABLE.

I am not able every day. I’m not. I’m not here to pretend I am. What I am every day, is someone’s mummy. Everything else is secondary. There’s a power in that too.

I do not deny being disabled. I have, but not anymore. However, I am not yet able to say I can accept it. Alex Brooker noted it was a continuous process, and maybe I personally will never get there. That possibility has to be OK too. Because even if I don’t get there, my achievements and my children mean that I will be OK with who I am, despite the struggles I have.