I’m only human, after all…

TMI alert, people: I’m currently in the middle of my, shall we say, ’emotional’ time of the month. And as every woman out there knows, during this period (pun intended) we can become irrationally angry or overwhelmingly emotional for no apparent reason (but hey, isn’t that what chocolate is made for?) Anyway, there is a point to this, I promise. Stay with me.

My husband, my daughter and I were travelling in the car on Monday when ‘Human’ by Rag’n’Bone Man came on the radio. Of course, being an emotionally unstable female, I was instantly in floods of tears, much to the surprise of my husband who nearly crashed his car in shock.

‘What’s wrong with you?’ he blurted out, while I wiped my tears. I shook my head.

‘It’s crazy time again,’ I joked as I tried to compose myself. But there was more to it than that, and he knew it too. And I didn’t have the words to explain. I do now, though.

The energy of the song and the repetitive line ‘I’m only human after all’ brings to mind what’s been going on in the media over the last few months with the remains found in the septic tank at the Mother and Baby Home in Tuam. Like many of us I feel sick as I think about all those women, both young and old, who gave birth to their babies and never knew what became of them. It’s likely that some, if not most of these pregnancies were unplanned, and instead of being supported these women were disgraced, disowned by their families, and left in the hands of the nuns. You’ve read some of the stories, I’m sure. It’s truly harrowing stuff, and it’s been playing on my mind for the last two months.

How can we claim to be compassionate when we don’t even allow people to be human?

I live in a country where my rights as a person with a disability are not protected. This is because something called the United Nations Convention on the Rights of People with Disabilities (or the UNCRPD) hasn’t been ratified by the Irish government. In theory, this Convention guarantees that no person with a disability should be forced to live in an institutional setting against their will. It guarantees access to Personal Assistance as a right, not a privilege. Those who have ratified the Convention (and Ireland is the only EU country that hasn’t) are answerable to the UN if human rights are breached. With constant threats of cuts to PA hours and people with disabilities having to give twenty four hours to use public transport, Ireland would certainly have a lot to answer for.

What upsets me the most is when you have a disability, you’re not allowed to make mistakes. Everyone makes mistakes, takes wrong turns and yet, when you have a disability you’re either expected to be some kind of Superwoman, or an utter failure. If you make a mistake, well, obviously you’re not cut out for education or parenthood or whatever it was you were trying to do. People judge each other; I’m no different. But this pressure to live up to an arbitrary standard, set by people who may have no experience of disability, is overwhelming. As my loyal followers are aware by now, I came up against intense pressure to prove myself when I had my baby girl. And as you may be aware, I never sought help for my postnatal depression which lasted two and a half years because I was afraid that, combined with my disability, it would give the HSE the authority to take my daughter.

And my overwhelmed, hormonal, PMSing self thinks this is truly unfair. I feel frustrated and tired with it all, and I only wish there was more I could do to challenge this injustice, to stop history from repeating itself. Sometimes I wonder if life would be easier if I wasn’t so sensitive, so stubborn, if I just didn’t care. But the truth is, I do care. A lot. Too much.

But there isn’t much I can do at  eleven at night, and I’m pretty stuffed from that Easter Egg I’ve just polished off…

Hey, don’t judge me, I’m PMSing.

…and I’m only human, after all…

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Cripping Up: Useful Exercise, or a load of Crap?

Earlier today my daughter, who is growing increasingly aware that her mummy is different to other mummies, asked me if I could walk properly when I was a little girl. ‘Nope,’ I told her, ‘My walking was pretty rubbish when I was a child too, but I didn’t need a wheelchair.’ She was silent for a second, then she said, a tint of sadness coming into her otherwise unblemished face:

‘Some of the girls in my class make fun of you. They say “ha ha, your mummy can’t walk properly.”‘ For a second, my heart stopped. This is the conversation I’d dreaded having with my daughter since the day she was born.

As nonchalantly as possible, I prodded. ‘And what did you say?’

Alison shrugged. ‘I said “don’t make fun of my mummy, it hurts her feelings” but they didn’t stop. I didn’t like it mummy. I would never do that to anyone.’ She was so absolute in her defence of my that it made me want to cry. ‘Mummy,’ she continued. ‘You know I don’t care if you can’t walk properly, or you’re in a wheelchair. I love you and you’re the best mummy.’ I sat, reeling. Where the hell had all this come out of, all of a sudden?

‘School,’ my friend said when I told her the story. ‘Kids learn all sorts from each other at school. They learn to see things differently, to question things, and most worryingly of all, they trust what each other says.’ This isn’t my first encounter with schoolkids of course; once upon a time, in the very same school in fact, I had the honour of dealing with this sort of thing first hand. And while some of the comments hurt (and they did, because I was an impressionable child, just as Ali is now), others were downright hilarious. One particular time I caused grievous injury to a classmate who was enjoying imitating my walking and consequently whacked herself off a door. ‘I never do that,‘ I laughed. And bingo, humour became my new method of self-defence. To be fair, it’s lasted pretty well.

But what has always interested me, even from my prepubescent years, is how people tend to be so fixated on my impairment and how they see it as problematic. ‘Do you ever wish you didn’t have Cerebral Palsy?’ is a question I’ve been asked more times than I’ve had hot dinners. My answer has always been the same, but it’s only in recent years that I understand why I’ve always said no. Cerebral Palsy, and any other disability for that matter, only becomes problematic when others are uncomfortable with it. Impairment and disability are different things. Impairment is a condition or diagnosis, and disability is the collective term for physical and attitudinal barriers facing people in society. I’ve lost you now, haven’t I? Allow me to explain.

My impairment wasn’t the reason why gaining entry to mainstream school was a battle, but the lack of supports available was.

My impairment didn’t stop me reaching third level education because I was enabled through Assistive Technology and Personal Assistance to do so. I used these as tools to unlock my potential.

I built a ramp on both sides of my home so  that I could consequently get a wheelchair to enable me to be independent and get out of the house. A lack of ramps would hamper my freedom, not my impairment.

My heart always sinks whenever I hear the words ‘disability awareness training’ because it often involves so-called ‘able-bodied’ people ‘cripping up’ to try and get a feel for what the world is like for a wheelchair user. With all due respect to those  of you who think this is a good idea, it’s not. Often, it involves able-bodied people using oversized or unsuitable wheelchairs and trying to navigate a physical environment. It’s an unrealistic portrayal because wheelchairs for full-time wheelchair users are designed for their specific needs. While doing something like this, you get a flavour of what it’s like to use a wheelchair to get around and the physical challenges involved. However, you cannot possibly be expected to know what it’s like to carry the burden of a history of hundreds of years of neglect, discrimination and degradation.

It creates awareness, as Kathryn Thomas did on The Late Late Show on Friday 7 April. Everyone knows her face. She was selected to create awareness of the barriers facing wheelchair users in Dublin. It got a great response from many people, saying that it was great to see this issue being highlighted at last. The reality is that people with disabilities have been saying these things for years. And yet, many wheelchair users, including Louise Bruton, who reviews access in Dublin for her blog, Legless in Dublin, was not asked to participate. She wrote an article for the Irish Times before the Late Late aired in which she said: ‘These pieces are a gimmick and if they help change the minds of a few people, then that is great, but they remove us from the discussion. By doing this, we are passing the baton and the opportunity to go deep into the experiences of a wheelchair user is missed.’

Blogger John Doyle was more direct in his criticism of this approach, saying in his blog: ‘Would your celebs paint themselves black and claim the understand racism? No they would not. Did John F Kennedy mimic being a different ethnicity to highlight racism? No he did not. He acted with legislation because he lived in a country that had one rule equality for one section and a rule of inequality for others’. We still haven’t ratified the United Nations Convention of Rights for People with Disabilities, which would mean so much more than a celebrity endorsement.

And why do we need celebrities to highlight the issues that we disabled  people have been discussing for years? The answer is simply we don’t – but for some reason our voices seem to only matter when they’re endorsed by politicians, celebrities and the likes. I wonder is this because people don’t want to know about the nitty-gritty of the discrimination disabled people face, or is it because they feel they can relate to an able-bodied person better? If that’s the case, will our voices, our own voices, ever be heard?

Because I don’t want my daughter answering questions about her ‘different’ mummy forever. I hope that one day she will be wise enough to say ‘You have a question about my mummy? You ask her yourself. I don’t speak on behalf of her, or anyone else.’