When Dandy Doodlez was diagnosed with Myagic Encephalomyelitis you may think her outlook looked bleak, but once she came to terms with her illness she painted a total different picture.
She told Pink News: “Overnight, I sort of lost everything in my life.
“I was a very active person. I was doing a degree, and I was working for Oxfam. I was doing all these different things, and it just suddenly struck me down.
“I lost the ability to walk, to tolerate light or sound, to read, to count. I had all of this joint and muscle pain, and fatigue.
“I spent about just over a year in the dark in my room. I couldn’t tolerate any kind of light. I had to wear my sunglasses in bed. It was it was very, very extreme.”
Daisy, who identifies herself as queer, has a creative mind, she loves writing novels and music, but after being told she had ME she wanted to learn an extra talent.
Towards the start of 2020, before the world went bonkers, one of her friends suggested Dandy should take up drawing on an iPad with the light settings “way down”.
“I found it was really, is really a great way of expressing myself,” she said.
“Having been isolated for so long, I didn’t really have a voice. So I started to post these things on Instagram as a way of connecting with other disabled people and queer people, just like having that sense of community.
“From there it just kind of exploded.”
Within months Daisy was contacted by the BBC and Warner Brothers offering her work, but it was a company called Lovehoney which made her grabbed her attention.
The sex toy firm, who at the time was working in partnership with disability start-up Handi, initially asked her to make a contribution to their new book The Handi Book of Love, Lust & Disability which was compiling poems and stories from 50 disabled writers, but Daisy did one better – she ended up illustrating the whole publication!
“It was so wonderful. It was so valuable to me personally, to have a goal, to have a focus,” she said.
“Because I think part of becoming disabled, when you’re very active person before, you kind of feel like you lose your purpose, your aim… This was something I could get my teeth into.
“It really felt like I got to know everyone I was drawing. I mean, they don’t all know me. But I know them.”
Since being told she has ME Daisy has heard a number of patronising comments that disabled people aren’t able to have intimate relationships.
“A very simple one is that people think we don’t have sex. It’s so fundamental,” she explained.
“They think that we don’t want sex or we don’t have normal human desires. Once you become disabled, you’re just completely stripped of all sexual desire, which is of course not true.
“The main thing for me, is that there’s this intersection of being queer and being disabled. And a lot of the time people can’t hold those two identities in the head, you have to do one or the other.
“Because they don’t see you as a sexual being, they then can’t make the jump to think you could be lesbian or gay or trans or could be any of these things.
“Personally, I find that very painful, because I only just came out as queer right before I got ill.”
After she came out Daisy realised quite quickly that the LGBT+ community isn’t geared up for people with disabilities.
She said: “For example, there is a very small LGBT+ meet up within my town, but it’s up a huge flight of stairs, so I can’t get up.
“There’s this huge issue within the queer community. So many venues are inaccessible. You get parade routes that are inaccessible. It’s an afterthought, and I think it’s such a shame.
“I think the huge misconception is that the community doesn’t think that we exist.”
“I mean, I’ve found another community. So I’ve kind of transposed. But there is, you know, a sense of loss with that.”
She said: “It might be the first time that a disabled person has actually seen themselves reflected and seen that they’re entitled to be proud of their sexuality and sexual identity.
“But I think secondly, is really important that people are not disabled will see it.
“We’re desexualised at the moment, so I think it’ll go some way to combat that, but also there’s the other side of the coin, which is the fetishisation.
Dandy added: “It’s one or the other, you’re either going to be fetishised and not seen as a human being, or you’re not going to be seen as a sexual being at all.
“So we want to do with this book, what Handi and Lovehoney want to do, is bust those taboos.
“Then we’ll get to this middle ground, where we’re seeing as human beings, as valid as anybody else.”
In 2020 Handi released a range of sex toys for disabled people.
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