Part I- My disability is not a tragedy, and I am not a burden

My disability is not a tragedy and I am not a burden. I am not to be pitied and most of all I am not an inspiration just because I live with MS.

My MS and disability is just one part of who I am. It is part of my identity, just like gender, sexuality, race or religion may be part of yours. Yet society rarely sees it that way. And for a very long time I did not see it that way either.

In 2022 society is still okay with turning wheelchair users away from the vast majority of buildings. Access to the outside world is never a given and usually involves tiring levels of planning and doing battle with a system designed for our exclusion.

So many of the trials of living with a disability are due to socially constructed barriers. So much of my anger about having a disability is because of the constant fighting I must do just to gain equality.

I think to truly understand our relationship with disability we need to take a long hard look at how ingrained ableism is in our culture. How disability is perceived only as an inherently negative thing: something to fear and hide from. Within that fear lives a lack of willingness to confront what it really is about disability that frightens us. What is it about a wheelchair that frightens you? Why is it the first thing most of us fret about when diagnosed with MS?

Normalising Disability

What if we were to change how we view and talk about disability, to normalise it? To accept it as a part of life, something most people will live with at some stage, whether permanent, temporary or incurred through the gift of ageing? To turn away and ignore it because we fear it and we’re not comfortable discussing it, least of all acknowledging that it could knock on our door, ignores the hundreds of thousands of people in Ireland who live with a disability and the changes we could collectively make to bring about equality. Equality we may need ourselves someday.

Society only seems comFortable discussing disability in the context of it being a tragedy and people who live with it are an inspiration? But to call us inspiring because we have to fight to navigate the world, while doing nothing to hold the system that creates most of our disability to account, is ableist.

I don’t want to be inspiring. I want to be equal.

It has taken me a long time to make peace with my MS. Even now I spend a lot of time wrapped in anger. But that anger is less to do with my disability and more to do with the way society treats me in light of it.

My wheelchair was the opposite of disabling

The hardest thing about MS for me has been dealing with the chronic pain element. That has been disabling. Struggling to walk was disabling yet using a wheelchair was the opposite of that. My wheelchair was freeing. In the weeks before it arrived it was like I was trapped on a tiny island, then this boat arrived that promised to free me and take me around the world. Together we were unstoppable. That is until we docked on the mainland to discover a giant fence blocking our entry and forcing us back to that island. This is what using a wheelchair often felt like for me. The relief it offered when my pain was bad, the potential that it could allow me to continue living the same life only on wheels rather than legs - all of that was shattered by the constant barriers to inclusion.

As a designer I find it crazy that accessibility is not the foundation of architecture and design. It took Ireland a decade to ratify the UN Convention on the Rights of People with Disabilities. A decade to recognise our rights as human rights. This tells us everything we need to know about the lack of political appetite for change.

Next week we will bring you the second instalment of Rosie Farrell’s Why are you still blocking our way to equality?

Rosie Farrell is a subeditor and designer. She blogs at

For further reading on disability equality check out the book Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau, and the Equal Too series on the Seneca Women Podcast Network.

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