One of the first things my stoma nurse said to me before my surgery was “you won’t be disabled but you can use disabled toilets.” And that has kind of stuck with me. I am not disabled. At least by the definition whoever decides that in my country.
The politics of disability are vast and complicated. In the last 6 months I’ve learned so much but barely scratched the surface. I want to emphasise that I’m just going to be talking from my own personal experience. I absolutely do not speak for all disabled people and you can use whatever language to describe yourself that you feel comfortable using.
So from day 1 I was aware that I am not legally or technically disabled. On the gov.uk website it says,
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
I guess that means pooing and farting don’t count as “normal daily activities”.
- ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed
- ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection
Is having an ileostomy “substantial”? It definitely takes me longer to go to the toilet and I have to go more often. I even have to set an alarm in the middle of the night because it fills up whilst I’m sleeping. So far I’ve had my stoma for 6 months but I’ll have it for years (or the rest of my life if I don’t get J-Pouch surgery).
Apparently my condition doesn’t qualify which means I don’t get disability benefits or the blue disabled parking badge thing. Which is fine, I don’t really need those things. I do get a radar key though. A radar key is a magical key of destiny that can unlock public disabled toilets. The first time I used mine it felt like I was opening the wardrobe that leads to Narnia. And it is the most satisfying thing when there’s a really long queue for the ladies loo and I just whip out my key and go straight into the disabled toilet.
The other thing I get is a medical exemption card. I get my stoma bags and other essentials through the NHS on prescription but with my card I don’t have to pay for any prescriptions. Seriously thank fuck for this. I need a lot of bags.
Here’s the thing though. This year I have felt disabled. But I don’t know if I’m allowed to use that word to describe myself. Yes, having a stoma makes it more difficult for me to go to the toilet. But having open surgery (twice) makes it difficult/impossible to do a lot more things.
I can’t run, skip, jump, walk long distances, stand up for long periods of time. This sounds like a disability to me. However, this is not permanent. I am in recovery, which I imagine will take several more months until I’m anywhere near my previous “normal”. But once I’m recovered having a stoma bag won’t stop me from running, skipping, jumping… I have seriously forgotten what it’s like to move my body around in a way that I’m not terrified of hurting it. And I love dancing.
I went to a wedding recently and it was a caleigh. It was definitely one of my lowest moments having to just sit and watch everyone else having so much fun dancing.
On top of this recently I had to pull out of an event/trip because my needs were not able to be met. I mentioned in a previous blog post that I was going to Finland to teach sex ed to kids but unfortunately I can’t go. The camp takes place on an island and the only toilets are festival portaloo style with no lights. Remember, I have to empty my stoma bag in the middle of night. Have you tried emptying a stoma bag in the dark? No thank you. Makes me sad that I might never be able to go to a festival again.
So, am I disabled? I don’t know. Do I feel disabled? Sometimes. Is my condition going to improve? Yes.
I find this topic really interesting so would love to hear your thoughts in the comments.