Joanne O’Riordan: Dear Gianni Infantino, I too feel disabled – because I actually have a disability

Dear Gianni,

Forgive me for writing a letter to you when you’re in the middle of organising a World Cup so controversial that it has forced football fans into a battle between morals and passion. I know you’re super busy trying to suck every bit of joy out of football.

I too feel disabled, but that’s because I have a disability. So naturally, when you stood up and declared you felt and identified with every minority’s struggles because you had red hair, I felt confused and quite annoyed.

I feel annoyed because the day before you identified with my own struggle, I was informed when I picked up my new wheelchair that, due to HSE cutbacks, I no longer have a seating clinic in my home county. I, along with countless other people with disabilities, now have to travel and battle with each other for appointments. You might have heard – the six-chair challenge on The X Factor. This six-chair challenge, however, boils down to which person with a disability has the worst experience in a wheelchair they’ll need 24/7.

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I feel angry because I have to fight with middle managers in our health system every day to live a life that is normal and free. I know you’re unaware, Gianni, but imagine having to give a month’s notice to the health service because you need to stay overnight due to work commitments or, God forbid, you actually want some time off.

I feel frustrated because, repeatedly, my family have to bail me out when I just want to be like my friends and live an independent life. For example, I once argued with a co-ordinator to get assistants because my parents were going to a wedding. Apparently I didn’t give the co-ordinator enough time to organise someone to cook my food, bring me to the toilet and ensure I didn’t run into difficulties. Fortunately, a brother living nearby took the day off work to hang out with the burden of the family.

I feel infuriated because every time I decide to take up a new sport, something you, Gianni, encourage me to do, I’m faced with the same response: due to cutbacks, we can’t work with someone with such high needs. I didn’t realise missing limbs were defined as high needs, considering I can do many things myself.

I feel sad because I have been robbed of living a normal life because, unfortunately, while I’m the one who has to identify as disabled, I’m actually more disabled as the environment around me and those in charge forget daily that I exist.

I feel upset because every time I choose to spontaneously go out and attend a football match with my father, we’re told by gardaí, security and sporting administrators that for a person to attend a game with a disability, we need to plan at least a week in advance. I’m sure, Gianni, when you turn up, a red carpet is rolled out, and nobody dares to question your existence.

Unfortunately, I don’t have migrant labourers working in slave-like conditions that I can call upon when the time comes

I feel exhausted because whenever I wake up, I know somebody, somewhere, is ready to tell me, ‘no, you can’t do that’ or ‘we just can’t do that’. I’m not talking about a week’s holiday in Ibiza. I’m literally talking about basic access to buildings or public transport. Did you know, Gianni, if I spontaneously decided to hop on the train to visit friends in Dublin, a ramp to get on said train isn’t guaranteed unless I have informed someone in advance.

I actually feel scared, Gianni, because while everyone dreads loved ones passing away, the lack of infrastructure surrounding care packages means people with disabilities are petrified of losing a family member. As a person with a disability, losing a family member means losing your last readily available resource to live an independent life. Some people relying on carers have told of how they’ve quite literally wet the bed because a carer wasn’t booked for that day. These terrifying experiences may await me because of poor infrastructure and funding. Unfortunately, I don’t have migrant labourers working in slave-like conditions that I can call upon when the time comes.

I feel slightly embarrassed too. Firstly, I can’t believe I’ve laid out my deepest and darkest feelings. I never envisioned I’d have to write another letter 10 years after discussing how having a disability can be like an early death sentence.

Secondly, I feel embarrassed because things that are supposed to make me feel beautiful or “normal” rarely do. I referenced how I got a new wheelchair, and while my family members are excited over my new top speed of 10kmh, I have to brace myself for questions from “lay people” about the wheelchair, questions that make me feel like a cyborg who desperately wants to fit in.

But, throughout it all, I feel grateful because even though life can be absolutely horrible at times, having no limbs means I’m a creative thinker. I can challenge perceptions and, more importantly, use my platform to share my lived experiences and hope it gets people thinking about, or at least aware of, differences that exist in the world.

I know you won’t read this because you don’t consume media, but I’m available any time to invite you into my world. Maybe then you can identify with my struggle and realise how powerful those petrodollars actually are.

Yours in sport,

Joanne O’Riordan.