What Disability Pride Month means to me

Thu 18 July 2024

Evie Orr

Evie lives in Glasgow with her husband David. She was diagnosed with MS fifteen years ago, when she was just 16 years old. For Disability Pride Month, she writes about how her attitude to living with MS has changed and what she thinks about Disability Pride.

I can imagine disability pride is a difficult concept for many of us living with multiple sclerosis – it certainly has been for me.

When I was first diagnosed, fifteen years ago, the stigma and prejudice that still shrouds illness and disability prevented me from wanting to identify as “disabled”.

I hid my diagnosis as much as I could. I didn’t talk openly about it and would get annoyed if others brought it up. 

I pushed myself too far. I decided against informing employers and struggled to keep up at work as a result. I spent many years embarrassed, scared, and in denial. Looking back now I can see how much of a disservice I did myself, but at the time I thought I was well and truly ‘overcoming MS’. 

And then a series of things happened that gradually started to shift my attitude.

Changing circumstances

Eight years after I was diagnosed, I changed from one DMT to another. During the change, I experienced an increase in neurological symptoms and side effects. But because I hadn’t informed my then employer, I pushed myself to go into work regardless.

To cut a long story short I ended up bursting into my boss’s office crying so hard that I could only choke out the words, “I have MS.” I was in such a state that they wouldn’t let me drive myself home.

It was after that (mortifying) experience I realised that maybe I should start telling employers. Every job I applied for in the following years I ticked “yes” when asked if I considered myself to have a disability. It felt like a relief, like I was allowing myself a little breathing space. But I still didn’t think of myself as “Disabled”.

Learning about disability

A couple of years later I got a placement working at the Glasgow Centre for Inclusive Living; an organisation run by and for disabled people. It was there, surrounded by disabled colleagues and service users, that I felt the most comfortable in a workplace I had ever felt.

It was there that I learned about the social model of disability and began to realise and challenge my own internalised ableism. It was there that I learned I was not “less than” because I used a walking stick, or needed time off for appointments, or ate my lunch in silence to recharge for the afternoon. 

Learn more about your rights at work

Disability Pride Month and me

MS is a difficult and debilitating condition, I’m sure I don’t need to tell any of you that. I wish I didn’t have it. I wish it didn’t exist, and hope that one day maybe it won’t – at least not in the way it does today.

But there is a power in disability that is palpable; one that I have witnessed, experienced, and felt. It is in the creativity and ingenuity of disabled people adapting to a changing body and inaccessible world.

It is in the grace and dignity with which we navigate all of the difficulties that come with disability, not least the attitudes of others.

It is a power we deserve to be proud of.

For me, disability pride is about holding two truths together:

One, that I can dislike all that MS is doing to my body, and many of the ways it impacts my life: being physically slower, not being able to do as much as others, needing some support in my day-to-day life, not being able to work, living with chronic pain. I can grieve for all of that. 

Two, that having MS - being physically slower, not being able to do as much as others, needing some support in my day-to-day life, not being able to work, living with chronic pain – doesn’t make me any less valuable as a human being. None of that is anything I need to be ashamed of. I am still entitled to take up space, to be visible in the world, to be included. 

Ultimately I think disability pride means recognising that I can dislike having MS and be proud of the person it has made me.

Find out more about Disability Pride Month and MS

Join Evie and MS Society Scotland for a Disability Pride Month Instagram Live on Thursday 25 July