20 Experiences that you are likely to relate to if you have a disability in Ireland

Hi there. Yes, it’s yet another disability post. Sorry about that, but, y’know, after living with a disability since birth and working in the disability sector for ten years, you become accustomed to the challenges facing people with disabilities every day in their quest for equality, respect, or sometimes just to be left the f*** alone to live their lives. If you are a ‘normie’, that is a person ‘without disability’, you might be a bit offended, and for this I apologise; you can’t please everyone and all that.

Here we go:

1. You are going about your normal business in your local Tesco and are reaching for an item when a stranger who has been watching you for half an hour (following you around the shop actually) pops out of nowhere to grab said item, startling you and causing you to fall on the floor. You look like a tit because you’re a grown adult who is now lying on the floor. Now they are pulling you up by your arms which is a waste of time because  your feet are not ready and bam! down you go again. Why do they let you out on your own?

2. When people can’t understand you because of your speech impairment and they start talking slower to you: ‘I – can’t – understand – you’. Well, I can still understand you, you tool, it’s me who needs to speak slower. Incidentally, I’ve been reliably informed that if someone has a hearing impairment/is deaf/Deaf, speaking slower makes things worse as the person may rely on lip-reading. So there.

3. When you try to order a wheelchair accessible taxi (the phone numbers for these are known by a sacred few) and are told that the taxi doesn’t operate past 11.30pm (come on, even Cinderella got till midnight) or that you didn’t book it four months ago,so no dice Ha, thought you’d be spontaneous, didn’t you? You thought wrong.

4. Total strangers think it’s okay to come up and bless you. Sometimes they grab your wrist, holding back tears. ‘You should go to Lourdes’, they say. I’ve been offered money to go to Lourdes and be cured. Guess what, people? I’ve been to Lourdes, and I’m still disabled. I want my money back.

5. You decide to stop being a heathen and go to Mass. I recently went to a dinner held by a disability organisation and there was a lovely Mass beforehand. However, there is something slightly disconcerting about having a Gospel where Jesus healed all the lepers and cripples when 75% of your congregation use wheelchairs or walking aids. Not that I’m equating disability with leprosy, but still.

6. You are an individual! You are You! So why is it when you see a person with a disability on the street are you likely to think, ‘I wonder do I know them’, and if you don’t, ‘I wonder why I don’t know them’.

7.  You ring Eircom/the bank/AES/Electric Ireland in relation to your most recent bill and they have those stupid voice activated menus. And then, after being on hold for 45 minutes, they disconnect you because they can’t understand you.

8. On a related note, people hanging up on you because they think you’re drunk, which saps your self-esteem so much that all you can then think about is getting very drunk.

9. Eejits trying to push your electric chair because they’re too silly to simply say ‘excuse me’. Incidentally, there is a way to manually push electric wheelchairs which involves unlocking the mechanics underneath it, which is handy if it breaks down. However, I can easily move the chair myself if I want – it’s amazing! Also, I’m pretty sure that if I lifted somebody out of the way in a queue, I’d get punched in the face.

10. If you are foolish enough to get angry or annoyed at anyone in 7, 8 or 9 above, you earn the dreaded ‘angry crip’ badge. Nobody like the angry  crip, or to use the more alliterative term ‘crip with a chip’. You think the whole world is out to get you. It’s not, it’s all in your vivid imagination. Get a grip.

11. Because of the strong support network provided by IWA and CIL (thanks guys!), it’s common for people with disabilities to befriend one another through committees, social events, etc. Beware that if you decide to meet up with your mates outside these circles, and you all have disabilities, you are guaranteed to have at least one nosy Nelly come up to you and ask ‘are you all out for the evening? Isn’t it great to get out?’ Er, out from where? Do people still think that people with disabilities should be institutionalised? Scary thought.

12. If you go for a drink/coffee/meal with your husband/friend/Personal Assistant/Family member, they may well be asked what you want to order. This is called ‘does he take sugar’ syndrome (no, honestly). Basically it’s an assumption whereby  you as a person with a disability cannot make basic decisions for yourself because you are a complete tool. No point in asking you so. You may hope for the best.

13. A noun refers to a person, place or thing. Just to clarify: a wheelchair is not a buggy, wheelbarrow or chariot; a person who uses a wheelchair is a separate entity from the wheelchair (a liberation tool), a person who uses these aids does so to get around, not just to get a pass into using the accessible toilet.

14. Which brings me to this point: sticking a wheelchair symbol on a toilet cubicle door does not make it an accessible toilet. If you cannot get the door closed when you bring your wheelchair inside the cubicle, then the toilet is not accessible. I’m sure the world does not want to watch people with disabilities pee, but hey, if it does, who am I to judge?

15. If you’re a bit of a gambler, why not head off for the day on the train? Sure, don’t they even have accessible toilets now? (not bad toilets either). Don’t forget to remind the train station staff ten times to ring ahead to your selected destination so that they can have the ramp ready for you. But don’t be surprised if, when you arrive, there is no sodding ramp and the station weren’t informed you were coming. Sure it’s no big deal travelling to the next station, begging them to get the ramp and let you off, and travelling back. Sure what else would you be doing?

16. If you’re a real daredevil altogether, get the DART. My husband nearly had his arm amputated by the doors of the DART when they closed on his hand and  then the DART proceeded to take off. He was on the platform and he could feel himself being dragged alongside the train. It took six strong men to pry the door open and release his hand. The reason why my husband had his hand in the door in the first place is because my friend and I were waiting for the ramp which didn’t materialise. What did we do? See number 15 above.

17. If you have a disability, you have to be nice, polite and well-behaved all the time. Telling someone to mind their own business does not go down well. Don’t let them know that we are real people, sssh! Some people with disabilities, just like you normies, are generous, kind and friendly. But others are just downright assholes. And guess what? Just because you know one, doesn’t mean you know us all.
18. People think it’s okay to ask you about your sex life. This is just wrong on so many levels. Why do people want to know this information? I blame programmes like ‘Little People, Big World,’ a show where a family explores their everyday lives in the public domain. I don’t want to hear about your sex life, don’t ask me about mine!
19. Having children is a gift, and there is a mistaken assumption that our children will be burdened by us and will have to care for us because we have disabilities. This will never happen as long as  the government realises that parents can be empowered through the provision of services and equipment that put us in the driving seat. Simples!
20. Finally, having a disability is not the end of the world, but people tend to think that it is. They find it incredible that we can be devoid of resentment or anger at the world for the hand we’ve been dealt. I know I have days where I wish I had more energy and less pain, but I’m sure even normies have these days. So stand (or sit) proud and tall. You are brilliant. You are fantastic. You are the subject of much speculation and curiosity. Enjoy it. Jordan had to get her assets enlarged for that sort of attention.
And all you do is go about your everyday life!
Well done, you xxx

‘DARE’ to go to College

I will always remember my four years as a student of Trinity College with fondness. But I must admit, there were times when I felt like a giant imposter. I was studying with some of the most intelligent minds in the country, and I remember sitting in the tutorial groups, listening to my peers talking, thinking, ‘Wow, I have not got a clue what these people mean by “post-modern” and “post-colonialism”. I wonder if my parents would be mad if I just left and became this “madwoman in the attic” I’ve just read about’.

Part of the reason I felt like an imposter was that I had asked for special consideration for the English Studies course on my CAO Form. Applying for a course via the CAO is a daunting experience for any student, but when disability or a Specific Learning Difficulty puts you at an academic disadvantage, it can mean putting more time and effort into your studies. On the face of it, I was a straight-A student, but only because I spent eight hours a day studying for the points. Honestly. Ask my husband or my dad (I would say ask my friends but I don’t have any because I spent eight hours a day, i.e. 4pm-12am, studying for two years). Even this wasn’t enough to secure me the 525 points I needed to study in Trinity; I only got 475.

Thank goodness for DARE.

DARE, which stands for Disability Access Route to Education, is a supplementary application process which complements the traditional CAO application process, allowing the candidate with a disability to compete for their course of choice, even if they do not meet the points requirement for the course. Availing of DARE also allows the candidate to inform chosen colleges of any difficulties or obstacles he/she may have faced during secondary school.  In addition, it alerts the college to a student’s existence and to be prepared to offer any academic supports, including note takers, assistive technology and library assistants.

Applying for college via DARE was  hard work. As part of the supplementary application process, applicants are obliged to include evidence of disability from an appropriately qualified psychiatrist, psychologist, neurologist or paediatrician.  These reports must be less than three years old. You may also have to complete a personal statement, outlining the challenges you faced throughout your educational journey and the impact your disability had on your academic life.

I remember when I applied for DARE, I did not really understand how the process worked. When I got my Leaving Cert results, I was convinced that I would be offered my third choice (Maynooth) instead of Trinity, which were my first two choices. I don’t think my mother was prepared for my moving to Dublin; she certainly wasn’t as ecstatic about the prospect as I was (yay! freeedom in Dublin City Centre!)

As time passed by, I gained more self-confidence and really started to enjoy College. I lived on Campus in Botany Bay and every morning I woke to the gentle poc-poc of tennis balls outside and the not-so-subtle gonging of the clock in Front Square. I would meander aimlessly around Front Square for hours, looking a little lost and demented, taking it all in while my wheelchair shook my bones going over the cobbles. I was a bit of a loner, I didn’t join any clubs or societies, I’m not really a big drinker, but I used to frequent many a coffee shop between lectures (nobody told me that you are supposed to be in the library reading when not at one of your twelve one-hour lectures, but when it mattered. I figured it out).

Trinity was one of  the best experiences of my life. I studied literature under some of the finest writers and literary critics of our time, but more significantly, the sense of belonging and community was so strong that I never felt like a ‘student with a disability’. Yes, I felt intimidated at first by how much my peers seemed to know about literature, but once I gained confidence, I too found the courage to ramble on about the portrayal of women/feminism/use of language or ‘rhetoric’. Once I stopped perceiving myself as different, I suddenly wasn’t.

And yet, the Student Disability Services, and in particular Orlaith O’Brien, Amy O’Shea (both have left), Trish Ferguson, Declan Treanor and Declan Reilly were always so supportive. I can’t speak for anyone else, but the support offered by these people (as well as many others) was second to none, and I was always listened to and treated with the utmost respect. There is no doubt that the provision of notetakers and library assistance enabled me to achieve an honours degree in English Studies.

If you are eligible for DARE, please answer ‘Yes’ to the relevant question on the CAO form. After 1 February, you will receive supplementary forms from colleges who are accepting DARE applications.

DARE is holding a number of application advice clinics in venues nationwide on Saturday 10th January 2015 from 10am-1pm, to allow students to ask questions and find out more about the scheme.  Further information is available on www.accesscollege.ie.

Talkin’ bout a revolution (again)

Election time has arrived again, and the atmosphere is almost electric. Posters on every pole, letterboxes crammed with manifestos, Facebook (and Twitter, I assume) home to pre-election scandal, the most recent being a van used for a candidate’s campaign parked illegally in an accessible parking space. This move caused outrage across social media sites this morning. Being a poet at heart, I saw this a metaphor for how far people with disabilities have yet to go in their quest for equality in Irish society.

Over the last five years, my profession has allowed me to explore and learn about the Independent Living Movement. I’ve studied the history of people with disabilities prior to the Movement and was physically sick after reading about the T4 Project which took place under Hitler’s reign during the Second World War. For those of you who are unfamiliar with this concept, I am talking about a scheme that Hitler himself devised where people with ‘incurable’ disabilities were institutionalised and later gassed or injected with a lethal substance (a ‘mercy death’).

The Independent Living Movement came almost twenty years later, coinciding with other human rights movements. I can imagine the excitement in the air as Ed Roberts, a young man and polio survivor, enlisted the assistance of an ‘attendant’ which enabled him to live away from home and attend university. He and a group of fellow ‘disabled students’ formed a group called the ‘Rolling Quads’ and they established the first Center for Independent Living in 1972. At this stage, the concept of somebody with a disability having control over the fundamental aspects of their everyday lives, such as deciding what time to get up in the morning, where to go, whether to work or pursue leisure activities was a foreign one.

And despite the Independent Living Movement arriving in Ireland in 1992, the physical and emotional freedom of people with disabilities is still in question.

We have to ask ourselves why, twenty-two years since the Personal Assistant Service was made available in Ireland, people in this country are forced to live in residential institutions and hospitals; why people who need the assistance to live independently live in fear of vital services being taking away; and how we got to a point where we say nothing in response to all the cutbacks in recent years in case we ‘rock the boat’, even though many people remain on a sinking ship, waiting to be rescued by a Government who caused us to sink in the first place.

It seems that Government is only interested in helping people with disabilities when times are good. Despite all the studies that have been conducted on the viability of the Personal Assistant Service, people are still living in institutions and hospitals, where they exercise little choice over their everyday routine. Having a disability is an expensive way of life, and yet medical cards are being revoked, housing grants are being refused and household allowances are almost non-existent. These cuts inhibit people with disabilities from participating fully in Irish society and ironically from contributing to society rather than sponging off the State.

So until we stand united and say ‘enough is enough – we want equality and guaranteed access to the services that will enable us to achieve it’, we as people with disabilities will always be vulnerable, passive recipients of services that are reliant on state funding. We need to ensure that in the future, we regain choice and control over our lives. The time for talking is now over; we need to speak louder with our actions.

Yet again.