Parenting · Politics · Special Needs

Waiting for 10 years – ratify the UNCRPD now!

Ten years ago, I was pregnant with our daughter. Having suffered a missed miscarriage the previous summer, we were naturally anxious about this pregnancy, but by March of 2007 I was safely in the second trimester, feeling good and looking forward to our baby’s arrival in July. The incessant nausea and exhaustion that had dominated the first trimester were – thankfully – a memory and I was enjoying having a bit of time just to myself.

Anyone who knows me well knows that I’m a bit of a news junkie (which I may have mentioned here before), but a story which happened on March 30, 2007, either wasn’t much reported (I genuinely don’t know) or it didn’t come onto my radar. Or maybe I read it at the time and then forgot about it. What was this news story? Well, on that day, March 30, 2007, the Convention on the Rights of Persons with Disabilities was opened for signature by the member states of the United Nations. The Republic of Ireland was one of the first countries to sign on that day, along with 81 others. This, you might feel, is something I, as an Irish citizen, should be proud of. Well, yes I am. Or I would have been had I been aware of it. Like I said earlier, maybe I read a news report about this and having read it, promptly forgot all about it. Remember that, its important.

The Convention on the Rights of Persons with Disabilities is described by Inclusion Ireland as “an International Agreement directed at changing attitudes and approaches to persons with disabilities”. Sounds right, don’t you think? Only as it should be. So if Ireland has signed it, what’s the point of this blog post? Well, signing it isn’t the full story you see. In order for it to mean anything in Irish law – for anything to really happen or change – Ireland has to ratify the UNCRPD. And ten years after it was one of the first member states of the UN to sign the Convention, Ireland has still not ratified it. We are the only EU state not to have done so.

To quote Inclusion Ireland again: “​The UNCRPD is the human rights convention concerning persons with disabilities. It is a list of rights guaranteed to persons with disabilities to improve their access to society, education and employment. Ireland remains the only country in the EU that has failed to ratify the UNCRPD after the Netherlands and Finland ratified it last year.” So its a list of RIGHTS for persons with disabilities and Ireland has not ratified this.

If you are wondering what any of this has to do with my being pregnant when Ireland signed the Convention, let me explain. Less than a month after Ireland signed the UNCRPD, we received the devastating news that our unborn daughter had a rare neurological condition and that it was highly likely she would have a significant level of disability. (I’ve written about this time in our lives here) To say we were distraught doesn’t come close. I still don’t have the words to describe my feelings at that time. But, July came and along with it came our amazing daughter Fionnuala. Yes, she does have severe intellectual and significant physical disabilities, but she is first and foremost our wonderful girl.

And over the last ten years we have learnt so much (and still are) and we’ve pushed and argued for services we wanted her to have. And we’ve met some incredible people. And we have seen just how little this State – our State – really seems to care about the rights of persons with disabilities. In fact, it feels like they care about it so little that they haven’t ratified the Convention they were so quick to sign up to. And we’ve learnt that to some people who live in this State, persons with disabilities are not seen as equal citizens, as equal people. (The pitying looks and comments, the parking in disabled spaces when they don’t have a permit, the unquestioning acceptance of the way things are without asking is that actually right… I could go on) And increasingly I find myself thinking that if the UNCRPD HAD been ratified before now, would we have spent so much of the last ten years fighting for services for our daughter? Signing petitions for a variety of disability issues? Going on demos and marches against cuts to services and grants, demanding rights not charity for our daughter and all persons with disabilities in this State? Or would we have been able to use that time and energy and headspace to just enjoy our daughter, to just live as a family?

If you believe that Ireland must ratify the UNCRPD, rather than just reading this and then forgetting it (like I mentioned above), join Fionnuala and me and many many others as we protest at Dáil Éireann, demanding that Ireland ratify the UNCRPD. You may not have a disability, you may not know anyone who has a disability, but please, if you can at all, join us. This is a human rights issue.

Fionnuala will be ten years old in July 2017. She was born with disabilities into a State that had just signed the UNCRPD. Is it not disgraceful that her State has still not ratified it?

Parenting · Special Needs

Fool Me Once – replace the Lunacy Act

There has been some outrage and considerable upset and distress in recent months here in Ireland with the broadcast of a documentary showing appalling treatment of residents with intellectual disabilities in Aras Attracta and most recently the findings of a HIQA inspection in St. Peter’s Care Home in Castlepollard, Co. Westmeath. I am not going into the issues raised in these reports here, to be honest I don’t even know where to begin with how they made me feel and what it all might mean for my daughter in the future.

No, today I just want you to THINK about something, and then DO something. In the media reports of the above cases the people who live in these facilities were largely referred to as ‘residents’. On occasion some commentators referred to them as patients which is not ideal language. You might be thinking, well residents, yes they do live in these places after all. They are all people with intellectual disabilities. You might wonder is there a generic term, a single word, to describe these people. Well, no there isn’t and there shouldn’t be.

Except when it comes to a piece of legislation that dates from 1871 and is still on our statute books. The Lunacy Regulation (Ireland) Act of 1871 was enacted in the Victorian era to protect and manage the state of lunatics. It defines a lunatic as a person found to be “idiot, lunatic, or of unsound mind, and incapable of managing himself or his affairs” today the courts service lists the reasons for peoples’ admittance into Wardships as ‘elderly’, ‘intellectual disability’, ‘psychiatric illness’,or ‘acquired brain injury’.” You can read all about this in more detail here. Inclusion Ireland, along with a number of other organisations, is campaigning to have the Lunacy Act replaced with the Assisted Decision Making Bill.

If you watched the documentary about Aras Attracta or read about St. Peter’s in Castlepollard, ask yourself this: should those people be described as lunatics and governed in part by a piece of legislation which does not seek to involve them in decision making at all? Or should they be assisted in making decisions about their lives, something that the rest of us take for granted we can do? I know what I think and what I want to see happen.

Yesterday marked the 8th anniversary of Ireland signing the UN Convention on the Rights of Persons with Disabilities (CRPD). Ireland has yet to ratify the CRPD. One of the things stopping Ireland from ratifying that convention is the Lunacy Act. If you agree that the Lunacy Act should be replaced by the Assisted Decision Making Bill (a Bill which, by the way, was introduced by the current Government in 2013 and remains at committee stage), then please, now that you have THOUGHT, DO something and sign the petition

And then urge others to sign. Thank you.

Parenting · Special Needs

Sometimes I despair for my daughter’s future

For a change I’m not giving out here about the endless fighting for grants to make houses suitable for people with disabilities, or fighting to get equipment to help our children stand or walk or whatever their current need might be. There is a bloody long list of things that we and other parents are fighting for but that is not actually why I sometimes despair for my little girl in the future.

No, the despair is down to attitudes.  The National Disability Authority regularly carries out studies into attitudes towards disability in Ireland.  The most recent was carried out in 2011.  2011 study PDF.  Some of it makes for depressing reading.  To quote Peter McKevitt, chair of the NDA, in the foreword to the report: “..the findings of our study in 2011 unfortunately show a hardening of attitudes across all types of impairments, and of particular concern are the less positive attitudes towards children with disabilities in mainstream education, which challenges the improvements that were achieved between 2001 and 2006.”

Parenting a child with special needs – of whatever type – is hard work.  And there will always be days when it feels harder than usual. But this few months it has felt (to me at least) as if we in the special needs community were fighting battles that we thought – hoped – had been settled years ago.  Back in February there was a hugely controversial article in the Irish Examiner by Tony Humphreys on autism.  Tony Humphreys’ article.  I know many parents who have children on the autistic spectrum and I know that they all found this piece to be hurtful in the extreme.  It outlines outdated attitudes and beliefs that will only serve to push understanding and acceptance of people with disabilities back years.

Then other little things keep cropping up – like being told “sure isn’t it easy for you with your parking permit” when I calmly explained to a woman that I needed that disabled parking space more than her.  I was shopping with DD and needed the space to unload her  and the wheelchair. The other woman had just blithely parked in the space because she was just “popping in to meet a friend” in the cafe.  She did move her car to a space just 3 spaces along…… but only after making the comment above.

Sometimes there are comments on internet fora whch reduce me to tears – like questioning whether or not children with Downs Syndrome should be allowed to attend mainstream school.  Obviously every case is different and for some children with Downs Syndrome a special school will be the better option.  But inclusion should be the aim.

Inclusion and understanding is the only way to go.  But when I read in the NDA study cited above that only 38% of people believed that children with intellectual disabilities should attend mainstream school, well my heart just breaks a little bit more.   As I have said here before,  when we found out our unborn baby had a rare condition our whole world just dissolved.  Once she was here and safely home with us things were easier and we were more able to think about the future.   One thing we were – and still are – determined about was that our daughter was not going to be seen as “that kid up the road who uses a wheelchair” but rather as “Fionnuala up the road”.  We never wanted her to be defined by her disability.  We hoped that society was far more inclusive and accepting of people with disabilties than the world we had grown up in.  Sadly I don’t know if that is the case.

Fionnuala is shortly to finish her mainstream pre-school where she has been going for 2 years.  She has had the support of a pre-school assistant (essentially an SNA) who has been wonderful with her.  The pre-school has done a huge amount for our little girl, she is now completely used to being with other children and is very content away from home.  All very important when trying to develop as much independence as possible.  The other children there are completely accepting  – yes they do ask why she can’t walk or talk very much but to them she is Fionnuala first and foremost.  And that fills me with such happiness.  I just wish I could be sure that she will always be met with that level of acceptance throughout her life.  But I am nowhere near sure of that – and that is why I despair sometimes for her future.