Kind Gestures

Kind Gestures

It’s amazing what meaningless rubbish you can learn just in mindlessly scrolling through social media. For example, did you know that International Kindness Day is marked on 13th November each year?

Reading this got me thinking about the busy week I had last week. Last Thursday, 9th November last, a delegation of people with disabilities including myself went to meet the Junior Minister with Responsibility for Disability, Mr Finian McGrath in Dail Eireann. The main reason that the meeting was requested by Clare activist Ann-Marie Flanagan was because Ireland is the last country in the EU to ratify the United Nations Convention on the Rights of People with Disabilities. Frankly, the meeting was a farce. Minister McGrath seemed distracted throughout the meeting, and while he could sympathise with the reality of our lives, we felt he could not empathise with our fears. He constantly interrupted us, and we left the meeting feeling that we’d been heard but not listened to.

Reader, I cried on the train back to Tullamore, the train I’d given twenty-four advance notice to travel on. Onlookers asked me if I was okay, and I simply nodded. How could I possibly explain how alone I felt in that moment, the feeling of knowing that deep down the Minister who represented my needs and so many others’ needs at government level had no perception of how difficult it is to be disabled in  Ireland today? I say this with the assumption that if he knew our frustrations, he wouldn’t have been so evasive in his answers. He would’ve assured us that our rights were on the way to being recognised. If the Minister can’t reassure us, then who can?

On Friday, I needed a change of scenery and so I eagerly accepted the invitation of an old college friend to meet for coffee in Lemon on Dawson Street in Dublin. To my delight, the conversation came easy, just as it had ten years ago when I saw her last. We caught up over two pancakes each, and I realised that I’d missed debating the meaning of life with her.

‘So, what have you been up to?’ she asked over the hum of students talking. I told her that I’d had the meeting with Minister McGrath and that I felt I’d wasted my time. ‘You know,’ she said thoughtfully, chewing her omelette, ‘I’ve lived in France and what I’ve noticed is that they don’t really have the concept of kindness there, the way they do here. People are kind here.’

‘Which is a lovely thing,’ I replied. ‘Where would we be if it weren’t for kindness?’

‘Oh, it is,’ she continued, ‘but in France, things are more rights-based. Everyone knows – and gets – what they’re entitled to. It’s not perfect, it’s just…different to here.’

That got me thinking. I don’t know much about French culture, but I’m familiar with Irish culture, and my friend is absolutely right – we are,  as a nation, very kind. The problem is that we depend on kindness and charitableness as a substitute for our rights, and particularly for people with disabilities, this can be problematic. Because of a lack of proper funding in the disability sector disability organisations, for example, the Irish Wheelchair Association, put much time and energy into fundraising. In order for fundraising to be in any way lucrative, people with disabilities are forced to portray themselves as vulnerable, almost desperate. And unfortunately, it’s not a lie. Because of massive gaps in government funding, we are vulnerable and desperate.

However, the CRC and Rehabcare scandals were only examples of why organisations should not rely on charitable donations to fund their services going into the future.  Money is going into inflated salaries rather than direct service provision. Meanwhile, essential services are being cut. On the other side of the coin you have many people with disabilities in hospital beds, costing the State thousands a year, when that money would be better spend moving people into their own homes, providing a Personal Assistant Service and enabling these people, regardless of their disability, to realise their potential.

In our meeting with Minister McGrath last Thursday, we shared some painful experiences with him, to illustrate how a lack of a rights based approach is denying thousands of disabled people across Ireland the opportunity to contribute to society. We urged him to help us to change the narrative of disability from one of victimisation to empowerment.

Finally, when we tried to extract a timeline from him of when the UNCRPD would be ratified, he refused to commit to one, saying that he’d done this last year, ‘and got burnt.’ He wasn’t going to make promises he couldn’t keep, he said.

Even when Ireland does eventually ratify the Convention, our rights as people with disabilities will still be in question.

However, we should do it regardless, not out of kindness, but because it’s the right thing to do.

Kindness is lovely, but it isn’t enough. We as people with disabilities need – and deserve – more than this.

 

Do I Have a Choice?

What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.