It’s Disability Pride Month

I’ll be honest, I didn’t know this was a thing until a friend posted about it on Facebook, but yes, July is Disability Pride Month.

On the 26th July 1990, George W Bush enacted the Americans With Disabilities Act, and in the same year, Boston held its first Disability Pride event. Parades now take place in several American cities and with the internet now in play, this is also taking off in other countries too. You can read a bit more about the history of this month here.

I haven’t updated in a while, but I thought this was maybe a good opportunity to get back into it again, since this is actually something really close to my heart.

Back in 2013, I found a weird blister sort of thing on my chest. Initially I was told it was just a tissue infection and to take paracetamol, but when it grew worse and eventually became a huge, open wound, my GP eventually sent me to hospital, saying she had no idea what it was. As a stroke of good luck, the doctor on duty in the admissions ward that day was a leading specialist in breast cancer and took one look at the wound then said, “It’s cancer, and there’s a lymph node there involved too.” Just by looking. He sent me for CTs etc, every scan in the book almost, and they all confirmed what he’d said just by looking.

So I was told not to start reading any long books, more or less. My oncologist didn’t really hold out much hope. She basically told me the tumour was damaging the tissue round about it and so it was too difficult to operate. They would do chemo, but don’t get your hopes up, kind of thing. The problem was, the chemo makes your immune system drop down to practically zero (actually zero at one point in my case) and I have this open wound on my chest, which immediately got infected. So I was in and out of hospital pretty much constantly for about six months, until the ward doctor at the Beatson Hospital in Glasgow overruled my oncologist and contacted the surgical team to arrange an excision. I switched oncologists not long after this because I was a bit fed up of her telling me I was going to die all the time, and she made a few pretty bad mistakes along the way as well, including nearly killing me by messing up my CHI number, which the NHS uses on barcodes to scan in to the blood store during surgery if they need more blood. Because she’d messed with it, they couldn’t get at the blood until they figured out where the error was. But anyway, that’s another story

So I had the surgery, then later another mastectomy just to be on the safe side as I’m BRACA1 positive, and reconstruction, which has left me with a load of scars, so basically I can never have a relationship now because who would want me when I look like Frankenstein’s monster? But also it’s left me with a load of mobility and pain issues that affect me every day. I can’t walk very far without really strong painkillers and standing around for any length of time leaves me in agony. I’ve not yet found a decent combination of painkillers either, so I’m still working with the GP on that.

The trouble is that, even when I was at the height of my treatment, I didn’t look particularly unwell. I remember a friend saying to me that if she didn’t know I was ill, she would’ve thought I was “one of those people who hug trees”, which I took as a compliment. I think. And today there’s no real outward sign that there’s anything wrong with me. So I’m always wary of using disabled toilets, for instance, or back when standing was still allowed on buses I always felt uncomfortable, that I was being judged, if I was seated and someone else, especially the slightly older people, were standing. I’ve even had people in Glasgow, when I was on the bus going to chemo, verbally abusing me for sitting down on the bus. Always by older people too. Another old guy actually started having a go at me while I was in the GP’s waiting room, going to have the dressing changed on the wound. Like, who has a go at a cancer patient waiting to get treatment? What kind of (insert swear word of choice) do you have to be to act like that?

I’ve also got the problem of my family. My father is basically abusive anyway. He’s got worse since lockdown started and actually got so bad, we’ve had to call the NHS’s mental health services about him because he was going about threatening to kill me and my cats at one point. He still wanders the corridors of the house muttering things like it would be better if I committed suicide or he’s going to blow up buildings because some firm mildly inconvenienced him. He’s about one more incident away from being sectioned, to be honest. But he tells everyone there’s nothing wrong with me and that my pain is just an excuse to be lazy. Quite often I have to reschedule trips to Glasgow or Edinburgh or wherever, places that require a longer journey, because I just feel so awful, I can’t face it. But he doesn’t get that. So I’m living with this constant atmosphere of “you’re a fraud, you’re faking, you’re lazy”, and I know a lot of people with hidden disabilities are made to feel the same way. And it sucks, quite frankly.

So what I wanted to say, I guess, was just to have patience with people, and don’t judge by looks alone. If you see someone dashing into a disabled toilet, yeah, maybe there’s nothing wrong with them and they just didn’t want to queue but equally they could have Crohn’s Disease or some other condition that makes them need the bathroom really urgently. You don’t know, that’s the point. And isn’t it better to err on the side of caution and not shout at them? If they are okay, you’ve seen someone use a toilet they shouldn’t really have used. Not exactly going to bring about the end of the world. If they have a condition though, and you attack them, you’re just adding to the pain and suffering they already have. Be kind, basically. At least, that’s how I always approach things, the way I hope others will approach me.