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.

 

National Carer’s Week 12-18 June

This week  (12-18 June) marks National Carer’s Week, which is an initiative designed to give recognition to the estimated 180,000 unpaid carers across the country. These people are hailed – and rightly so – as heroic. Many carers have given up dreams of marriage, having a career, maybe juggling caring with raising a family. It’s noble and admirable, yet I find something deeply troubling about the narrative surrounding carers in Ireland.

I probably don’t have any right to be writing this blog.  I’m lucky insofar as my care plan doesn’t currently involve intimate personal care, just help with things like tying up hair, doing buttons etc. I mentioned before that one of the things I value most is my independence. That, and not being labelled a burden.

As a mother of one little girl, I’m ready to plop myself on the couch by eight o’clock in the evening. I love being a mother more than I ever thought I could, but sometimes it can be exhausting – answering incessant questions, doing role plays, going to the park. And this is without having to take care of toileting needs, inserting feeding tubes or anything like that. BUT I would hate to be in that dangerous position where I would view my own daughter more as an object of care than her own little person.

Traditionally, when a disabled person has a child, it is often assumed that the child will take on the role of a carer. Well, let me tell you – Alison has her little chores for which she gets rewarded, but she is not a carer. I have an excellent personal assistant service (not carers) that enables me to be the best mother I can be. I myself direct the Personal Assistant in what I need, and doing so allows me the energy during the day to write pointless blogs like these and spend some quality time with my daughter in the evening. And it allows my husband to enjoy an existence separate from me. I don’t have to worry about him harbouring resentment for me, because I’m not completely dependent on him. We are very much an average husband and wife.

It is harmful to reduce the identity of a person who has ‘high-dependency needs’ to an object of care. Everyone has the right to personal autonomy, to choose how and where they spend their day and with who. I know if I had ‘high dependency needs’ I wouldn’t want my parents, my husband or my child caring for me. I’d want someone fresh, not so emotionally involved, someone who could appreciate my individuality as well as know how to meet my needs. These sort of people are hard to come by. A FETAC Level 5 in Healthcare Support is useful from a practical point of view, but there is a danger that service provision is becoming overmedicalised, with less emphasis on finding out what the person actually wants and more about ticking boxes and providing a basic care plan and often wholly inadequate service.

If this government really cared about the needs of disabled people and their carers, then they wouldn’t dare contemplate cutting the Personal Assistant Hours or the hard-to-come-by Respite Grant. Instead of having a tokenistic approach to unpaid carers by dedicating a measly week to them, the government could alleviate the workload of carers by looking after the needs of the disabled person themselves and, as the late Martin Naughton suggested, allocating them funds so that they (and their families if appropriate) can choose the services they need. Martin called this putting disabled people ‘in the driving seat of their own lives’.

I’ve spoken to people over the last number of years who regard the possibility of acquiring a disability or impairment as ‘a fate worse than death’ and who, like me, would hate to become a burden on their families. But this attitude is a dangerous one. Centuries of conditioning has led us to believe that it’s our impairment that is the problem, and it’s not. It’s the manner in which Irish society and our healthcare system are constructed to make disabled people feel like they’re somehow ‘wrong’, problematic, inconvenient. We are now the only EU member state that hasn’t ratified the UNCRPD. In the UK, disabled people who cannot work are labelled ‘scroungers’ and I can see that attitude creeping in here now. I now believe that positive change is not progressive, and can be undone more quickly than it happened in the first place.

To all of you unpaid carers across the country: I salute you, and keep up the good work. You deserve recognition, not only this week, but every single day. But can I ask a favour? Please join us in challenging the system. Please don’t resent your loved ones for the care they need. They are not at fault. All of our lives would be so much easier if the dignity of disabled people and their carers were upheld through the provision of basic human rights.