1 in 60,000

You've heard of one in a million, well I'm 1 in 60,000.

Or at least that's what my ocular albinism makes me; that's my eyesight condition. Well, actually, it's called ocular albinism with nystagmus, only that's a mouthful.

If you prefer non-medical terms, I have albinism, but it only affects my eyes, and the nystagmus part means my eyes like to go for little walks or uncontrollably dance.

• Legally, I can't drive, you don't want me behind a wheel.
• I can't see across distances, so don't wave and then think me rude for not seeing you.
• I struggle to focus because of the constant movement in my eyes, also because I'm neurodivergent. Double whammy!
• I get fatigued if I look at something for too long, like computer screens, and I don't get on after a while.
• I have to really focus to see things, and even then, I mistake objects for people and people as animals, don't ask.
• I struggle with telling the difference between dark colours, which is why I always wear colourful socks.
• I'm sensitive to light. I'm not a vampire; my eyes just detest it.
• I have terrible depth perception. Honestly, I find new bruises every day from walking into a corner or something.
• It's a barrel of laughs, okay, maybe not, but it makes me 1 in 60,000. It means I'm Registered Blind. It means I'm Disabled.

But being able to articulate any of the above didn't happen overnight, oh heck no.

I spent the majority of my life struggling to accept I was Disabled. It was something I was ashamed of, this big, dark, dirty secret that I tried to hide, only not that well to anyone actually paying attention.

I'm going to say the thing I probably shouldn't, but no one chooses to be Disabled.

You don't wake up and think, being excluded by society sounds great. Sign me up for struggling to find employment.

A childhood of segregation and exclusion in education. The constant battle with a society that tells you, "You can't, we don't want you, you're not as capable, you're different." The inner monologue of internalised ableism making you believe being Disabled makes you the problem.

Nobody chooses to navigate a society not designed for them. Nobody chooses to be Disabled, we are born that way, or we acquire it, but that doesn't suddenly mean self-acceptance and knowing how to articulate your needs. No matter how much our parents, carers, and guardians try to prepare us and encourage us, that inner empowerment doesn't just manifest.

There is no handbook to being Disabled. There's no magic wand or button we can press to suddenly have it all figured out. No one can teach us how to be Disabled because there is no one way to be Disabled, how to articulate your needs, what adjustments or accommodations you are going to need, or even how to deal with the constant reminder that being Disabled is the problem, you are the problem.

We don't know what to do when we experience ableism. We don't even have a name or word for it.

We just experience it, adapt to it, and it feeds our internalised ableism, which just becomes worse and worse because it's constantly being fed by the ableism you experience. And it's everywhere, literally.

Asking for help? Boom, someone says something ableist to you. Want to go shopping? Nope, you can't, computer says no, the website is inaccessible.

I for sure didn't have it figured out.

Most of us spend years trying to figure it out, and the honest thing for me is, I don't think I'll ever have it figured out. When I found out I was neurodivergent, I didn't have it figured out then. In fact, finding that out sent me spiralling to find the answers and the acceptance that I thought, having been registered blind my whole life, I would have had, but I didn’t.

Figuring it out doesn't mean you suddenly love yourself and hey presto, you're ready for Disability pride.

It's learning to not blame yourself for the barriers you experience.

It's not locking yourself away and isolating yourself.

It's knowing your rights as a Disabled person.

It's finding that person, that community, that friend who you can share the good, the bad, and the inaccessible with.

It's learning to be able to articulate your Disability, your needs.

It's being able to talk about your Disability and no longer feel at fault or ashamed.

It starts by recognising ableism, understanding its impact and the toll it takes on our lives.

It doesn't happen overnight, but it does start with learning you were never the problem, it was society disabling you along.

Until next time...

Stay Inclusive

Stay Woke

Stay Empathetic

Jamie Shields

Registered Blind AuDHD Rhino

www.Disabledbysociety.com