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JACQ KELLY: I’m not proud to be disabled but I’m hopeful things are changing

Jacq Kelly and her Guide Dog Hillary.
Jacq Kelly and her Guide Dog Hillary.

You might have noticed that June was LGBT+ Pride month.

LGBT+ Pride is something I always look forward to.

I love the affirmation it gives me. I love being around other members of my community.

I get (happily) emotional about the progress we have made, while remaining mindful of the distance we still have to go.

It was only while I was scrolling Twitter that I saw some mention of a Disability Pride Month, that takes place in July.

And the term ‘Disability Pride’ didn’t land easily with me.

Neither did a lot of the videos that I found, featuring disabled people talking about how and why they were proud to be disabled.

I couldn’t identify with any of that.

I love being LGBT+ but being disabled has only had a negative impact on my life.

As I lose my sight, due to a condition called retinitis pigmentosa, I also lose the ability to enjoy many of the things I loved.

No more live theatre, art gallery visits, sports, or visiting new places without the accompanying anxiety.

On a good day I’m experiencing disability resilience, on a middling one I’m living disability resignation, and on a bad I feel disability resentful.

Pride isn’t a thing that I have ever associated with being disabled.

Retinitis pigmentosa has shaken my perception of myself

Returning to a degree of office-based working has amplified the extent to which my eyesight has deteriorated during lockdown without me being entirely aware of the impact that was having on me.

Navigating spaces outside of my home and the local shop again has been tough.

I gradually noticed how exhausted I was making myself by trying not to seem ‘too blind’ around colleagues.

Pride parade in St Andrews. Photo: Steve Brown / DCT Media

I have been fiercely independent since I was roughly four years old.

I was neither a mummy’s nor a daddy’s girl.

I was always my own, and retinitis pigmentosa has shaken my own perception of myself.

I have injured myself countless times trying to wing it.

I have only recently started learning to swallow that thing they call ‘pride’ and ask for assistance.

“Use your words,” is a phrase occupational therapists, guide dog mobility instructors, support workers, and friends have repeated to me hundreds of times.

A guide dog in training at the Forfar centre.

And I am only just now starting to learn to do it.

I’m working on myself, but on a societal level there is so much that we have to do.

Discrimination is nothing to be proud of

At a recent employment-focused disability webinar hosted by Radical Recruit, I listened to person after person talk about the battle they have had in trying to get the support they needed from their employers.

One of the speakers, Jim Bensted, a former assessor for Access to Work talked about how he tries to urge employers and employees to think about support in the workplace as being less about making ‘reasonable adjustments’, and more about providing someone with the tools to do their job.

It feels like the most positive, and helpful, perspective from all sides.

People who have the right tools to do their jobs are obviously more likely to do them well.

And yet people reported being told that having this support in place would be unfair on non-disabled colleagues, being tasked to find and implement the solutions themselves, and being made to feel like they were a burden on the basis of their disability.

It comes as no surprise then that disabled people are far less likely to be in paid employment than non-disabled people or that we are almost twice as likely to live in poverty.

It isn’t uncommon for the suggestion to be made that we should be willing to work for lower wages because we are intrinsically less valuable.

None of this is ok; none if it is anything to be proud of.

Talking about issues can only be a good thing

I’m lucky. In my workplace my colleagues offer me assistance, support, and are backed up by workplace policies that are in place to ensure that no disabled person is left behind.

Yes, there are things that are sometimes missed or done in a way that isn’t ideal.

But I feel confident that I can raise these and they will be addressed professionally, and with respect for my dignity.

Not everyone has that, of course, but we are on a journey, and I think we are making some (slow) progress.

It made me think that, for me, Disability Pride Month is less about disabled people per se, and more about those – who may or may not be disabled – who have, and do, work to make the small changes, that deliver a world of difference.

I still think it needs renaming and reframing, but at least it got me thinking, talking and writing about some of the things that matter, and that can only be a good thing.


Jacq Kelly works in public affairs, and lives in Fife. She is a trustee of The Hive, Fife’s LGBT+ Centre in Kirkcaldy, and is accompanied through life by a lovely Guide Dog called Hillary.

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