Parenting · Politics · Special Needs

As a carer I hate

A month ago I was having an especially bad day and in a need to vent but with a thousand other things all demanding my attention and/or headspace at the time, I couldn’t sit down at my laptop to let it all out. So I tweeted a list of things that were in my mind at the time, one after the other, it took me maybe 20 minutes. The lovely Candi over at oftencalledcathy put them together in a meme for me and encouraged me to elaborate so here goes.

Being told by well-meaning people to ask for better services (like just asking will make them appear)
An example of this, from my experience, is “why don’t you just ask for more respite?” Gee, that has never occurred to me before! Never mind the fact that so many services are stretched to breaking point. Never mind the fact that our respite service caters for over 70 families and is not open 365 days a year and tries to group the children attending together in terms of age and ability. Add to that the fact that they cannot have too many wheelchair users at the same time (fire regulations etc.) and our daughter is a wheelchair user. Also, I know many of the other families who use the service and I know how desperately they need a break too. But hey, yeah sure I’ll ask. This kind of comment doesn’t help.

Being asked why I get Carer’s Allowance when “you’d be at home minding the child anyway”
Oh where to even begin with this one which I’ve had aimed at me online many times. Caring for a child with disabilities is so much more than just ‘minding the child’. Its doing physio, speech & language therapy, occupational therapy, attending numerous appointments, administering medications, dressing, feeding , toileting a child who cannot do this for herself yet but is way older and bigger than most children who need that kind of help. Actually, I’m not going to dignify this one with a response any more. Jog on.

That it makes me financially dependent on my spouse
I’m struggling to find the words to describe how this makes me feel. Its not a bone of contention between us, but its not a position I ever wanted or intended to find myself in.

Being referred to as brave or selfless or a hero. Meaningless platitudes or to put it another way, bullshit
I know that one’s going to annoy some of you. Well, just stop and think why you might say that to a person like me. Is it going to help them in their caring role? No. Will it make them feel better? For some, maybe. It doesn’t for me. Does it make YOU feel better when faced with a scenario/life that you could never envisage or imagine having to live? Ah now maybe we are getting somewhere. You see, and again this is just my opinion, none of us family carers chose this role. That doesn’t make me a hero. I have no choice but to do this. But by telling yourself and me that I or others like me are brave, does it make you feel a little bit better that you’ve said something nice and encouraging to the carer? If you really want to make me feel better or cope better do something practical. Or something political. Keep reading.

Not being taken seriously by the State
If we and the work we do as family carers were taken seriously by the State we’d be better paid (see next point) and we wouldn’t be expected to work in the conditions we work in. We’d get full pension rights (another thing that causes me stress about my financial dependency), and automatic medical cards. No, carers don’t automatically get them, so anytime I need to see my GP its €40. There have been times when I’ve not gone to the GP although I probably should have.

If all the family carers in the State went on strike the country would collapse. If we all stopped doing what we do, the caring, the feeding, the lifting, the administering of medication, the physio, the therapies, the researching of new equipment and ideas to help your child achieve their fullest potential, the lobbying of politicians and State bodies, the toileting and all the other things we do and left our loved ones at A&E’s, respite centres and schools around the State, then our over-stretched services would disintegrate completely. But we won’t of course because we love our children and those we care for. And I really mean that, we do love them with every fibre of our beings. The State knows that and it knows we will never down tools and this allows it to abdicate their duty of care to its citizens.

That the Carer’s Allowance is means tested. I get €66 per week or just over 39c per hour
Being a family carer is not a 9-5 job. Its 365 24/7, because even when she is at school or in respite or asleep, I’m on call. I’m trying to make our house more suitable for her to live in as she gets bigger (and we get older). I’m reading up on different medications and therapies, and wondering if they will work better for her. I’m attending workshops and information sessions on various disability issues. And for all of this I get 39c per hour. Its means tested which means that my husband’s income is assessed as are our outgoings. You sometimes hear politicians defending the rate of Carer’s Allowance and pointing out that its €209 per week. Yes it is, IF you get the top rate but many of us don’t yet we do the same work. Is this an equal pay issue I wonder? There are also a large number of family carers who – because of the means test – do not receive ANY Carer’s Allowance. How is this ok? (If you’ve spotted a difference between the amount I get and the amount on the meme above, we got a €5 per week pay raise last month after the meme was made.)

Feeling that I have to justify myself and the work I do. And it IS work, done out of love yes, but still work
And I’ve just realised that this blog post is doing just that……

That we carers have to share our private family lives on national media to get help
I’ve done this a bit myself, not in any great detail. But how is it ok that the mum of a profoundly disabled child had to go on TV last month and talk in quite intimate detail about the realities of caring for her son in order that she can raise the issue of home support services? I watched it out of solidarity and was interested to see the amount of people on Twitter saying how terrible it was (yes, it is) and how sorry they felt for her. But I didn’t see anyone questioning was it ok that she had to go on national TV and say this stuff. What does this say about our society that we don’t have a problem with people being almost forced to forgo all sense of privacy and dignity in order to fight for services? I don’t have the answers, but it makes me really uncomfortable.

That I have to worry NOW about services for my daughter when she becomes an adult which is not for over 8 years
She will be 10 this summer and I’ve attended a few workshops and information sessions on adult services over the last year or so. I didn’t really think anything of it until a friend asked me what was this next meeting about and I explained it was about adult day services for people with intellectual disabilities in Meath (where we live). She looked at me with a mixture of shock and disbelief and said “why are you going to that when she’s only 9?” And you know what, that really hit home. Over the last ten years I’d gotten so used to having to research and investigate what services are out there that I no longer gave it a second thought. But I should not have to be thinking about this now, I should be enjoying her childhood, secure in the knowledge that there will be appropriate day services and respite services available for her when she leaves school. In 2025. But I’m not and that’s why I have to go to these meetings now so I can prepare myself.

That its very difficult for us to get out & march yet very few march with us
Its great to see people marching in huge numbers for issues that matter. Its heartening and reassures me that in this new post-Brexit, Trumperica dystopia we seem to be falling into that so many people still get riled up. But please, if you are reading this post or seeing things on TV or in papers about disability rights and carers’ rights, please join us next time. And ask your elected representatives why there aren’t enough respite homes or adult day services, or why carers get such an insulting amount of money …….. the list is endless. Because disability is not necessarily something a person is born with. People acquire disabilities every day. The 2011 census showed that 13% of the population of the State were living with a disability. That’s over half a million people. There are about 4.5 million people in this State, so the chances are you know someone with a disability or at least one of their close family members. Just think about that the next time you see something about disability online or on TV and you cluck your tongue and say “ah that’s terrible”. Next time, do something about it.

Advice lists of the things I should do to look after myself yet no one considers lack of time or money to do them
I’ve been tagged in loads of these. Generally the advice is to exercise more, eat better, make time to meditate or similar, develop interests and hobbies outside your caring role, make sure to spend quality time with your partner and have time with your friends. These all require time, in some cases money, and a support network. Not all carers have those.

Watching other carers in crisis and feeling so completely powerless to help
Its heartbreaking. And its frightening because I can never shake off the feeling that one day it could be me.

That I get no training in manual handling yet am allowed/expected to do untold irreparable damage to myself every day
That seems to surprise an awful lot of people, well in my acquaintance anyway. “What, you mean you’ve never had any training?” Training? Training on how to lift my daughter who has disabilities? No. Training on how to lift and manage her physical needs so I don’t hurt my back? Nope. So, no, as far as I can make out, family carers like me don’t get any training in how to care for our loved ones. Just think about that for a minute. My daughter will be ten years old in a few months. She is very slight for her age but has long legs (inherited from her Daddy). I’m 5ft 2in and carrying a few extra stone yet I am allowed, expected even, to lift and manoeuvre her in such a way that means I am doing untold and irreparable damage to my back and joints. In her school and respite service she attends, both of which she adores, there is absolutely no way this would ever happen. No way would one member of staff be allowed or expected to lift her in this manner, both for health and safety and child protection reasons. Yet I’m expected to.

The mental strain of it all. I don’t like the person I am at times
I’ve always been hot-tempered, fond of an argument and unafraid to voice my opinions. But I’m increasingly becoming less tolerant of bullshit and timewasters and I’m snappy at those I love. I’m mentally tired most of the time and that takes a physical toll too.

That I’m expected by some people to accept this is all part of some deity’s plan. Really?

If you want to believe that some deity made a decision to damage my beautiful little girl’s brain in order to meet some part of a bigger plan that’s up to you. I don’t believe that and I find the concept of a deity that would do that frankly quite terrifying. And for anyone reading this who doesn’t accept that some people think that, just ask yourself what other interpretation we can put on the words “ah sure he knows what he’s doing.” Or “everything happens for a reason.” I can’t see a reason why any supreme being would damage the brain of the most wonderful precious little girl ever. And if you think you know a reason why, keep it to yourself please. Your belief system is not mine and just because my daughter has disabilities, that does not entitle you to push them onto us.

That when we get respite some people tell us to go away for a few days when sometimes we just need to rest
“You should go away for a few days, put your feet up.” We’d LOVE to, sometimes. But that costs money and energy. (Booking, packing, travelling) Respite is more usually on weeknights and my husband has to go to work the next day so its not really an option. And sometimes we just want to chill in our own home, or catch up with some DIY or gardening or other stuff. So please, lose the slightly disapproving look and the “but you should be doing xyz” its our time, let us spend it how we choose.

That my child’s school is 26 miles away so even in an emergency its 45 mins to get there adding to stress
Just imagine you’ve had a call from the school, your child is ill/had an accident and they need you there ASAP. Your stress levels soar, its part of being a parent. Then imagine you have to drive three-quarters of an hour (because with the traffic that’s what it takes) until you see for yourself. Most parents thankfully don’t have to face this, but if your child attends a special school there’s a good chance your child (who can have really quite high care needs and in some cases can be medically fragile) will be that far away from you for a few hours each day. Just think about that would make you feel.

That I rely too heavily on food to cope even though I know it just exacerbates things
Caitlin Moran called overeating ‘the addiction choice of carers’, I think she’s on to something. When life is this stressful, anything that gives momentary pleasure or relief is irresistible. Food is so easy to use as it enables us to carry on with everyday life, in a way that severe addiction to drugs or alcohol can’t. And knowing that its making me feel worse doesn’t mean I can easily stop.

The knowledge that this will only stop when I die or if my child predeceases me. Knowing there’s no end to this
I can’t add anything to this. Its overwhelming so I try not to think about this.

That I can so easily type this out without having to think too hard
Its probably only the tip of the iceberg….

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?

General Election 2016 · Parenting · Special Needs

#GE2016 part three: Why we have to Disable Inequality

The Disability Federation of Ireland has been running a campaign called Disable Inequality prior to and during the general election campaign, asking voters to vote to end discrimination for people living with disability. You might wonder in what ways are people living with disabilities facing discrimination. Take a quick look at the stories that the Disable Inequality campaign are sharing and you’ll see.

I do not have a disability but am the very proud mother of a feisty and fabulous daughter who has physical and intellectual disabilities. If you have children, ask yourself will your child/ren be helped and enabled to achieve their full potential? Children with disabilities are frequently told no they can’t take a certain subject for Junior or Leaving cert because the extra supports they need are not in place. Does that sound fair to you? Children with disabilities (who are still growing) are all too often left months, even years, with too small or inadequate equipment, or face long waits to have physiotherapy or occupational therapy. Does that sound fair to you?

Some children with special needs have to attend special school (like our daughter does) as their local school cannot provide the assistance and supports they need to achieve their full potential. That means they don’t get to go to school with their siblings and neighbours. Does that sound fair to you? In our case, our daughter’s school is 26 miles away. That is a round trip of 52 miles each day. 5 days a week. That is 260 miles she travels each week just to attend school. She has been doing this since she was five years old. Does that sound fair to you?

If children were facing these issues around equipment, therapies, appointments, schools because of their ethnicity or religion there would (hopefully) be an uproar. Yet when it comes to our children with disabilities we are told its all due to budgetary cutbacks and to staff shortages and to ‘the system’. If you get the opportunity to talk to a candidate in the next two weeks, ask them what they and their party if they have one are going to do to end this discrimination. Or contact them and ask. During the marriage referendum campaign last year I recall seeing a poster that said ‘Let’s treat everyone equally’. I hope I live to see the day when that really happens.

Parenting · Special Needs

If your child goes to special school……

When it became apparent that our little girl would not be able to attend mainstream school owing to the level of her disabilities, we adjusted our ideas and hopes for her and began to explore what options were open to us.  In our county, there are two special schools, one of which caters for her level of disability.  It is an excellent school and she is very happy and settled there.  There are some things that I hadn’t really thought about prior to her starting school that you miss out on when your child attends special school.  Some are small, but not insignificant, others are quite big.

1. School gate chats and getting to know other parents.  Our daughter’s school is 26 miles from home.  She, like most of the other children who attend the school, is driven in by bus.  That obviously takes a great strain off parents but it also means you miss out on the informal chats and networks that often develop amongst parents. Our school has a good Parents’ Association, but again the distance can make it hard for people to attend meetings.

2. Usually you have no choice about which school your child attends.  Now I know that many parents around the country whose children attend mainstream school have very few  – if any – options.  But when your child has to attend special school, it feels like the idea of even HAVING options goes completely out of the window.  Parents of children in mainstream schools may wish their child to attend a certain school for religious reasons, or they want education through the medium of Irish, or they want a school in a particular geographical area, or one with smaller classes.  Whichever of these reasons is paramount to them (and of course many parents are perfectly happy with their local national school, which is great), at least they have options they can investigate.  That option is not open to parents whose children have to attend special school.  As I said our county has two special schools, but only one caters for children with our girlie’s level of disability.  So that was our only ‘option’.

3. Your child may well have a lot of travelling to get to and from school.  In our case, as I said above, the school is 26 miles from home.  That means she leaves home at 8am and is back around 3.30pm.  That is quite a long day for a small child, and she was only just over 6 when she started there.

4. The thing of not getting to mix regularly with other parents means that you don’t get to know the parents of your child’s classmates.  So organising to meet up outside of school – which can be a great social thing for both parents and children – is often non existent.  And inviting your child’s classmates to a birthday party?  How, when you don’t even know their parents?

5. It takes your child away from their home community.  That means that other children of her age in our town don’t know her and she doesn’t know them.  That means no playdates (much harder with a child with special needs, I know), no involvement in our local school which is a big part of any community.

Please don’t misunderstand me, we are very happy with our school, our daughter is very settled there and has made fantastic progress since she started.  I hope this post doesn’t come across as a ‘poor me’ post, its not meant to.  Its just that there is so much that we all expect to experience as part of parenthood, that for those of us whose children attend special school, we can never have.

 

Parenting · Special Needs

Where is the equality??

Like most evenings, I watched the Six-One news earlier tonight. (For those of you outside Ireland, this is the main evening news programme on our main channel) I am often angered, enraged, upset or saddened by what I see on the news. Equally I am often cheered, amused and intrigued. But tonight’s programme left me feeling depressed and hopeless.

Tonight’s lead story was a report on HIQA inspections of Aras Attracta and St. Peter’s, both residential units for adults with intellectual disabilities. The findings of these inspections are beyond shocking. At St. Peter’s there was ‘major non-compliance with regulations’ and incidents including unexplained bruising on a resident, nutritional needs of residents not being met, access to fire exits, safety issues, weak governance and management…… I could go on. You can read the report for yourself: https://static.rasset.ie/documents/news/4904-10-december-2014.pdf

At Aras Attracta which had been the subject of a truly shocking documentary in December 2014, an unannounced inspection in January found a number of causes for serious concern, also including some points of major non-compliance. This report can be seen here https://static.rasset.ie/documents/news/4910-14-january-2015.pdf

This was hard enough to watch and hear, but two later stories in the programme affected me too. Parents of children with special needs in parts of Dublin are having to campaign about inadequate provision of respite services owing to changes in facilities and the non-opening of another facility. Parenting a child with special needs is hard bloody work without having to fight for the little bit of respite that should be available. This report was followed by the awful story of what I can only describe as a disability hate crime, where a teenage boy who has autism was attacked by a group of other teenagers who forced twigs into his mouth and forced him to expose himself. The attack (I will not call it an ‘incident’) was filmed and uploaded to social media. There are no words to adequately express my disgust at this.

Now, any one of these reports is terrible to hear – I suppose we should be at least thankful they are reported at all – but to have three reports on our main national news all of which show that people with disabilities 1. do not get the services they need, 2. are all too often using services and receiving levels of so-called care that do not meet their needs and do not allow them dignity, and 3. are the target of hate crime leaves me sickened to my very core. This is the country our daughter – who has physical and intellectual disabilities – is growing up in. On days like this I am terrified for her future. Since she was born we have done everything in our power to develop and encourage her independence. All I want to do tonight after watching the news is hold her tight, keep her with me and never let her go.

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 http://www.ipetitions.com/petition/replace-the-lunacy-act

And then urge others to sign. Thank you.

Parenting · Special Needs

Person First Language

Its a term many of you won’t have heard of before. Quite simply it means referring to a person not by a medical condition or a disability they might have, but rather by their name. I’m sure most of you (especially of my vintage!) will have heard terms like ‘that Down’s kid’ or even worse ‘that Mongol kid’ to describe a person who has Down’s Syndrome. Its about putting the person first – about seeing the person not the disability. This might sound obvious to us in the supposedly enlightened, liberal, accepting 21st century, but trust me this kind of labelling still happens. A lot.

When our daughter was diagnosed prenatally with Dandy Walker Syndrome, we embarked on a steep learning curve. We’re still on it and probably always will be, although its not as steep any more. But we are still on occasion brought up short by attitudes towards people who have disabilities. When she was just six weeks old, I brought her for the BCG vaccine, and while waiting in the reception area of the clinic I was shocked and a little hurt to hear one nurse refer to my child as ‘the Dandy Walker baby’ when speaking to another nurse. Bear in mind I was only six weeks after giving birth and my hormones were all over the shop so it took very little to upset me but this really shocked me. When we went in for the vaccination, I mentioned this and just said that “you know she has a name, she’s not the Dandy Walker baby”. It was kind of brushed off with the comment that “its such a rare condition [true] and we see so few babies with it [true]” None of that is good enough reason to label my child. Fionnuala is Fionnuala. She has Dandy Walker Syndrome, she is not Dandy Walker Syndrome. You can find out more about this via Lose the Label which is all over social media

You never hear “that asthma kid” or “that cancer bloke”. We seem to understand that a person who has asthma or a person who cancer is so much more than their respective medical conditions. (And I just want to point out that I am not belittling either asthma or cancer here) But many people still think its ok to describe a person who has a disability by that disability. Its not. Fionnuala, my daughter, is funny, can be very cheeky in a cute way, is very affectionate, has a hot temper, loves school and books, adores music and her current favourite food is carrot cake. THAT’S who Fionnuala IS. Dandy Walker Syndrome is what she HAS. Person First Language. Remember it. Use it.

Parenting · Politics · Special Needs

Lorraine Higgins and disabled parking

A photograph was doing the rounds on social media yesterday of a campaign van for Lorraine Higgins, who is the Labour candidate in the European elections for the Midlands-North West constituency, which is the one I live in. I’m including it here for anyone who hasn’t seen it
Higgins van

Now, as the mother of a person with disabilities who has a parking permit (which by the way costs us €35, they don’t come free despite what many people think!) this annoyed me big style. I don’t know where this photograph was taken and it really doesn’t matter. What is obvious is that there were other spaces the driver could have used. This kind of thing happens all the time. I have lost count of the times I have had to drive round our small town in the hope that one of the disabled spaces might come free – on one memorable occasion I nearly blew a gasket when I saw a works van parked in one of them. While I was sitting in the car seething I saw the driver come back to the van. So I turned off my engine, dashed over and gave him a piece of my mind. To be fair he did apologise but also used that classic line “it was only a few minutes”. That is not acceptable.

Anyway once the photograph above hit social media, Lorraine Higgins issued a comment on Facebook and Twitter last night which I have copied verbatim:
“Thanks for bringing this to my attention. A driver putting up posters at 8am this morning made an honest mistake. It won’t happen again.”

And that really made me see red. No pun intended. My problems with her comment – I can’t call it an apology – are these:

1. She did not apologise – imagine how that makes the disabled community feel. Once again a politician rams home the message that they don’t matter
2. An honest mistake? How could s/he not see the big white disabled parking symbol painted in the space? If s/he couldn’t see it s/he shouldn’t be driving.
3. So it was 8am – so what? People with disabilities are out and about before 8am you know! Or are people with disabilities (like my daughter) and those who care for them (like me) supposed to be hidden away in our houses/care homes while the rest of the world goes about its business?

I sincerely hope Senator Higgins did not mean any of the things I took from her comment. But her words were ill-chosen and the whole comment ill-thought out. I know she is horrendously busy at the moment with her campaign. But that is no excuse. I have seen innumerable reactions to this on social media this morning and members of the disabled and special needs community are disgusted by her response. She has certainly lost herself a good few votes over this. That might seem like an overreaction to some people – you are all entitled to your opinion of course – but just try and think for a minute about what kind of a message this has sent to those of us who live with the reality of disability.

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.