Legless Turns 1

A thank you to you, a little more about me, and a little something on the referendum.

Perhaps I should have waited to take this photo until after I got my hair done

Gee whiz. Here we are. One full year later, and I cannot believe that you have stuck with me this long. Thank you. Today’s post is free for everybody to read, and hopefully you continue to read, and that I continue to write.

It’s wild to me that I can see so many of you opening the weekly emails, commenting on them, sharing them… It’s a level of support that’s both encouraging and nurturing. And the fact that some of you pay for this - Christ. Thank you.

I no longer use Twitter, I barely look at Threads, I don’t have a Blue Sky, and I do the bare minimum on Instagram, but Substack has evolved into its own microcosm, and I’ve come across other writers and readers that I would never have met within the bubble that was Irish Twitter. RIP - we had a good run. So if you never heard of me before 2023 or before I was on Substack, but took a risk by subscribing and reading - thank you.

Legless (2.0) was born out of frustration. I was in an in between stage of my career, not fully in love with journalism anymore and hoping to dive further into the creative side of my work. It was also born out of a new relationship with my body and my disability, one that has led me to requesting my full medical history, from 1987 until today, so that I can greater understand who I am.

I never knew that you could do such a thing, but every hospital as a Freedom of Information Officer and you can just ask them. By email. And then they arrive. By post. Or by WeTransfer. I used to think that I would have to break into a warehouse off the side of the M50 with a rogue ward sister to get these files. Nope. And if this information is new to you too, prepare yourself mentally and emotionally before you open those files. Have a support network, whatever that may look like to you. Discuss it with your GP, your friends, any people working in care or medicine you know who can help you translate or process the material.

As I type this, I have nearly 3,000 pages of doctor’s notes, nurses’ reports, X-ray slips, anaesthetic records, discharge letters, and so on, sitting beside me on the table, and saved in a chrome window that will never be closed. Everything I need to know about me is there, but I’m taking my time with the reunion.

This desire to know more came from writing to you every week, and working on my book. There was this great big elephant in the room of my writing, and that was that I never fully understood my disability. I was like Heather Gay in that episode of Real Housewives of Salt Lake City when she woke up with a black eye and riddle-like explanations. I kept talking about the thing, but not actually talking about the thing. I’ve also started watching Housewives for the first time ever. What a big year it’s been for me so far.

It’s been an eye-opening experience to hear from other disabled people and about their own relationships with disability. Our community may not be in person, but online we have each other’s backs and it has been so incredible building these connections, and finding a safe space to ask, “was it like this for you, too?”

A big learning curve for me has been watching other people on their journey with diagnoses that has led them to identify as disabled, when in a previous era, that word would have been the farthest thing on their minds and the last thing from their mouths. The internet has opened up the definition of disability, and it’s becoming a thing to embrace, which can only mean great things in terms of universal acceptance.

Coming from what feels like the archaic medical practices of the 80s and 90s, where little to no self-care was implicated or required, I can’t help but feel envious of the people who can embrace themselves so freely now, but that’s something for me to unlearn. It’s hard to not feel jealous of the sick girl hash tag, when I spent so much time in a nun-run hospital with no internet access (because there wasn’t any), and no TV or anybody to talk to after 9pm. Again, that’s something for me to work on. Just because things weren’t easy for me then, doesn’t mean that everybody should experience that struggle now.

So, here’s to another year of writing, connecting, learning, and unlearning.

8th March Referendum

It’s timely that I get to celebrate one year of Legless one week before the Referendum that will change the definitions of family and care in the Irish Constitution. Unlike previous referendums, this one has crept up quietly.

What we are voting on

1. The first Referendum concerns the concept of Family in the Constitution, and to expand the definition of family by recognising “durable relationships” outside of marriage.

2. The second Referendum proposes to delete an existing part of the Constitution, replacing the language around “women in the home”, and inserting new text providing recognition for care provided by family members to each other.

While I will be voting Yes in the first, I will be voting No in the second. The second Referendum has been spun with an anti-sexist campaign, but its wording is implicitly sexist, according to Free Legal Advice Centres, and it doesn’t increase or protect the rights and livelihoods of disabled people and their carers. Voters are confused by this Referendum, and rightly so.

Dr. Tom Clonan, an elected senator and a parent to a disabled child, explains in the Irish Examiner why the proposed amendment is a problem:

The wording of 42.B gives constitutional expression to the conservative ideological position that the primary responsibility for care resides within the family and family members. The article is not rights-based and is very carefully worded to indemnify the State and the HSE from any legal obligation to support family carers. 98% of unpaid family carers are women and girls.

The use of the word ‘strive’ is designed to ensure that State supports
for care are not legally enforceable or ‘justiciable’.

Apart from the State dodging their duty to provide reliable care services and keeping carers in a vocation-based role, the proposed amendment limits disabled people by keeping care within the family. This can be detrimental to internal family relationships, but if there are cases of abuse or control in these families, it may be harder for disabled people to find a way out.

It is enraging that a No vote in the Care part of the referendum is being lodged on the same side as anti-trans and anti-immigrant campaigners. That alone would convince a lot of people to vote Yes to avoid being lumped with The Bad Guys.

Care services in Ireland are under pressure. Carers are unsupported, and disabled people (and their carers) are living limited lives as a result. The financial totals of the Carer’s Benefit and Disability Allowance are not enough to live on, and if the State doesn’t oversee the responsibility of care, this amendment will keep carers and disabled people in a lowly position, a never-ending cycle of barely getting by.

Journalist Dearbhail McDonald explains in the Guardian how the general citizen’s assembly was aware of this shortcomings of “strive”:

For its part, the assembly wanted the article deleted but replaced by non-gender-specific language obliging the state to take reasonable measures to support care within the home and wider community.

With limited resources, you can’t blame the state for not wanting to be held hostage to a constitutional (as opposed to a moral) obligation to uphold socioeconomic rights such as health, education, housing or support for carers, the vast majority of whom are women. Nor do unelected judges want to direct social and fiscal policy from the bench.

But the deviation from the citizens’ assembly recommendations has rankled with exhausted carers who are buckling under the strain of looking after their loved ones and care workers on low remuneration who may themselves have no sick pay or pensions.

This Referendum isn’t as complex as it may initially seem, but the wording is dismissive and reductive to disabled people and their carers. With just over a week left until the vote, hopefully you can find the time to study the proposed amendments, and to learn that voting No in the Care Referendum doesn’t make you sexist, but it will save us from a more ableist society.