Left Outside Alone

It’s Budget Day today in Ireland and for all I care it could be Budget Day in Outer Mongolia. I used to care. I used to march, I used to campaign for better healthcare, universal child benefit, better services for disabled children and adults. And what has happened? Almost nothing. Even though we now have a Minister for people with disabilities, very little has changed, except for the lucky few.

I can no longer bear to listen to most politicians, as they don’t sound genuine any more. I feel ashamed of my former profession – public relations – which was supposed to be about good clear communications, but is now about spin. When a trained politician speaks you cannot trust that anything is true, what they say, how they say it, or even the tone of their voice, because everything has been rehearsed and planned, and that goes for many representatives of organizations and companies too.

On the other hand, I do think that most politicians work extremely hard, and don’t get credit for that. I think many go into politics with high ideals, but lose their way, due to the shiny baubles of power, influence and pay. Just look at our current President, who said he was only going for one term, but is now looking to be re-elected for another seven years. People tell me he’s doing a good job, and I suppose we should at least be thankful that he hasn’t done anything bad or embarrassing.

I’m expecting the Budget to be all about throwing money at as many people and organizations as possible to keep them quiet, then taking it back in increased indirect taxes and charges for services. More complexity to keep accountants, lawyers and public servants in their jobs. There will be no vision, no grand plan, no hope of any real change And certainly nothing significant for disabled people or their carers.  We’re left outside alone.

The problem in Ireland for many people isn’t high taxes or low welfare, it’s the high cost of living and poor services. Money cannot buy the services my children need for example, because they don’t exist!

Respite for B is a good example. As a family in crisis we were given a Case Manager, and one of the items on the agenda was respite. She’s very lucky now to have a personal assistant who brings her on an outing every second Sunday, and it’s been suggested that the respite box has now been ticked and it’s likely that there will be no overnight respite because it is simply not available for adults with her high care needs. Lack of real respite means I haven’t slept properly for years, can’t go away on my own, can’t go to family weddings, comfort sick relatives in person, or support friends in need. At the moment I can’t even go out in the evening because of the problems affecting my youngest. And that’s just one of the many many problems that seem insoluble. Even my eldest daughter is affected, I need her help when she is at home, and she worries about the future and what demands will be placed on her.

You see the State has very little interest in families like mine unless a crisis happens, and then they wring their hands and offer just enough to try and stop things getting worse. We’re just considered dead weight. Outside society, outside the economy. Not of interest. Especially not of interest to Ministers of Finance who are only interested in balancing the books and pleasing their own supporters.

 

 

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Wake Me Up When It’s All Over

The date for the referendum has not yet been announced, yet the campaign is already getting nasty. I refer of course to the proposed referendum to remove the 8th Amendment to the Irish Constitution, which effectively bans abortion in almost all circumstances (for my non-Irish readers).

I’ve made my decision, and I explained my reasons here. But I will not be campaigning or reading or listening, because I find it all too upsetting. There’s good people on both sides, compassionate people who do care, I know that. But there’s others who will use anyone, any strategy, or any argument in their attempt to win this battle, and it’s ugly to watch. So I plan to avoid it. I will be muting and hiding as much of the coverage as I can.

Personally I find some of the tactics of the Save the 8th campaign barbaric (with apologies to my pro life friends). Pictures of dead foetuses are surely disrespectful, and seeing one in your Facebook news feed or on the street must be very upsetting for those who’ve had abortions, as well as those who’ve suffered miscarriages or given birth to very premature babies, like I did.

Then there’s the fake accounts being set up to discredit the other side by spreading horrible lies.

And I was disgusted by the exploitation of children with Down’s Syndrome by one group. I fired off an angry tweet asking whether this group actually provides any support to children or adults with Down’s Syndrome who “leave school and face into a life of sitting at home with their parents or being dragged around shopping centres by their carers.”

Not a very balanced tweet, I admit.

When I calmed down and admitted that I know adults with Down’s Syndrome who live happy lives, I was admonished by a member of the repeal campaign because it “confuses the issue by giving undue prominence to a minority.”

That tweet left me feeling very uncomfortable.

The repeal side can also present a cold clinical tone when discussing the whole issue of abortion, and how many babies/foetuses will be affected, which I also find upsetting.

And many of the campaigners ignore what happens post pregnancy whether it’s ended early by abortion, or results in a baby being born. Everything has to be presented in black and white, but life is messy, and there will never be a solution that works in every situation.

Abortion is obviously an emotive subject, and I’d love to ask everyone involved to play nicely, but it ain’t gonna happen, is it? I’ve never liked wars, so please excuse me while I head off to hibernate. Wake me up when it’s all over.

 

You Too versus #MeToo

I’ve kept my mouth shut so far on #MeToo, but foolishly I cannot seem to keep quiet any longer. That’s because of the generational divide that seems to be opening up between women my age and older, and the younger generation on the topic of sexual harassment under the #MeToo campaign.

I am sad to see so many older female icons like Catherine Deneuve being attacked for expressing an opinion on the #metoo campaign. But I actually wish they would stay quiet, or at least be a little more nuanced. Because warning of potential consequences of the #MeToo movement is fairly pointless. No one knows. The main consequence of speaking out is that the media are now salivating at the prospect of portraying this as a battle between different groups of women (just like the stay at home versus working mum debate) and this has the potential to totally obscure the original point of the campaign. So please can everyone calm down and stop rising to the media bait.

Yet here I am, speaking out too.

Because the world was a different place when we were young. And perhaps we have internalised misogyny, as was said on twitter this morning. But there was no Stay Safe programme in schools to help us work out what was acceptable, there was no internet to tell us, and we didn’t confide in our parents in those days either. We just dealt with it as best we could, and we’ve been dealing with it for 50, 60, 70 or more years, but not necessarily in ways that would be acceptable to today’s women.

Sexual harassment on the street? Change the way you dress. An older man puts his hand on your leg when you’re eight? Keep out of his way. Factory production line stops and cheers as you walk through in your suit and high heels like they’ve never seen a woman before? Hold your head up high and concentrate on not tripping over. Work colleagues bring you to a lunch time pub with a stripper? Make them sit outside.

These are some of the challenges I have dealt with over the years. I haven’t forgotten them, but I don’t think they traumatised me.

And remember I have always been socially awkward, always jealous of those women (especially Liverpool and Dublin women) who always seem to have a smart answer for any man who dared to give them grief.

Hopefully if the #metoo campaign succeeds, it will make life easier for all women, in all situations. But I don’t think that misogyny will completely disappear, I think it will just go underground and women will still need to be ready and able to cope with it at times.

Relationships between younger men and women may well change as a result of this campaign, but hopefully it will all work out in a positive way: every time I see a young dad hugging his child to his chest in a sling, my heart lifts at the changes that have already happened.

At the same time, I think that most of us older women have the confidence and experience to continue our relationships with men in the way that we choose. We shouldn’t be criticising the younger generation for the changes they want to see.

It’s true that the behaviours that negatively affected my life are not covered by the #MeToo campaign as far as I know, and I do not write about them publicly. But perhaps if the campaign really succeeds, it will ultimately improve all human behavior. And that would certainly be a very good thing.

3,000 homeless children and still no Government action #MyNameIs

My children are not homeless, but they could be. All it takes is illness, unemployment or bad luck, and that secure safe life you thought would continue forever can come tumbling down around you. I used to rent with friends back in the 1980s and landlords kicked us out twice to sell homes or to demolish them.

But I was young, earning a good salary and childfree, and accommodation was plentiful. There was never a problem moving to somewhere new.

I tolerated issues that I wouldn’t put up with now: like sleeping in a ground floor bedroom when the window could be opened from the outside 😶  But I was young and indestructible, unlike so many of the homeless families in Ireland right now.

Can you imagine coping with problems like these with young children to care for? Having to move every year or so, often to worse accommodation as rental properties becomes scarcer. Having to change schools, GPs, find other services in your new location, as well as trying to provide stability for your children.

And then the day may come when there are no more rental properties that will take your family. When the bank finally repossesses your house. When your relationship breaks up and you lose the roof over your head. Then you become a statistic, and for too long, an invisible statistic. One that other people don’t want to think about.

200,000 empty homes3,000 homeless children

Today is National Day Against Child Homelessness in Ireland, and it’s being marked by #MyNameIs posters throughout Dublin. There are 3,000 homeless children in Ireland and many more are at risk of homelessness, like my friend Tracy, who also has a severely disabled child. You can read her story here:

http://www.independent.ie/irish-news/news/it-worries-my-mum-so-it-worries-me-declan-9-scared-of-becoming-homeless-and-not-having-school-to-go-to-next-week-36064329.html

There are also 200,000 empty homes in Ireland, so something has gone badly wrong somewhere.

Some say that the homelessness is a deliberate state policy, and while that may be an exaggeration, it is certainly state negligence. A policy of leaving the supply of homes to the private sector, ignoring increases in population, the likelihood of home repossessions in an era of austerity, and introducing policies that cut the income of lone parents (who make up a large proportion of new homeless) have all contributed to the current crisis, but presumably the government figured that homeless people are not their voter base and could be ignored.

But they can’t be. Families have to be given accommodation. Right now it’s in hostels, hotels or hubs, all of which are unsuitable and all cost more than providing real homes. So it doesn’t make economic sense.

It doesn’t make sense for society either, because a price will be paid. Homeless families will pay it now. But society will pay later in broken lives and broken people who may need life long support, or worse. If you want children to grow up to respect the State, you need to treat them with respect during their childhood. Homeless children are being treated as expendable right now.

I see this getting worse, because the future planned for us all involves ordinary people owning nothing and renting everything, from cars, to houses, combined with a cashless society, precarious employment and work activation policies, so far more people will be living from month to month, never knowing when one false step will mean they lose everything,

This is not the future I want for my children, or the children of my friends and family.

We must say stop, before it’s too late.

What you can do:

  1. If you see one of the #MyNameIs posters, please take a selfie with one and share on social media to highlight and help end child homelessness.
  2. Follow @MyNameCampaign on twitter and MyNameIs on Facebook.

Everyone’s disabled now, and that’s a problem

During the 20 years since B was born, she has gone from being mentally handicapped, to having special needs, to being severely disabled, to having high support needs, but now apparently she is merely ‘disabled’.

And I’m not comfortable with that.

It’s hard to discuss because it makes people very angry, as I found out this week on twitter.

Language has become an emotive issue on social media, with many people (like me) wary of some topics because we don’t know the current terms in use and the backlash can be ferocious if you get it wrong.

Some believe that changing language can change attitudes, and I agree: but the meaning of the favoured new words has to be crystal clear, especially in this area, where words affect attitudes, policies and the lives of real people.

Disabled is now the preferred term, yet someone walking with a limp can call themselves disabled, as one mother pointed out in a radio interview this week.

If that’s how the public and policy makers think of disability, then they will never consider children and adults like my daughter in their plans.

Families like mine feel betrayed, ignored and abandoned, by the state, the media, and even sometimes the disability community itself. The current public discourse simply denies the existence of severe and profound disabilities.

Worse, I’ve noticed a trend for the term ‘severe disabilities’ to be flung around like confetti at a wedding, especially for inspirational stories like the ‘severely disabled’ man who has a brownie bakery in the US. Great for him, but he bears no resemblance to my daughter. And a journalist I respect asked on twitter to speak to a severely disabled person yesterday. I’d love to see her try to get a usable answer from my non verbal daughter. The only time that severe disabilities seem to be used correctly is in the reporting of medical negligence cases.

The denial seeps through every level of state and society: Through policy, language, and by ignoring any attempt to discuss the issues.

My eyes were opened in 2001 when I was searching for a school for my daughter and all I was offered was a so-called Day Development Centre (DDC) where she would get great care, but no access to teachers. When I challenged this, the existence of DDCs was denied by the State. So we took a case to court, and it was settled in my daughter’s favour. Because children in Ireland have a constitutional right to an education, and that means access to a teacher. However that’s the only right that has helped my daughter. As an adult, she has no rights, especially as Ireland has still not ratified the UN Convention on the Rights of People with Disabilities.

So clarity is needed, rights are needed, and so is understanding and inclusivity.

This article has been doing the rounds, and is an explanation of why we should all use the term ‘disabled’, and I like most of it, apart from the last paragraph:

“We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most.” 

Because, you see, my daughter and many others like her, cannot do all those things.

Once again, her existence is being denied by being called ‘disabled’.

Personally I liked the term ‘special needs’ because it sounds positive, whereas disabled sounds negative to me, but I’m happy to describe my daughter as ‘disabled’, as long as her needs and disabilities are also included in its meaning.

I also do not believe that our lives are tragic or that my daughter suffers as this article seems to suggest, even if others feel that way. Nor would I describe my 20 year old as a ‘baby’ despite her functioning level (and that’s a post for another day).

I think if more support, more positive coverage, real rights and real help was provided to the disability community and their carers, then many of these issues would go away. For now the State is happy to sit back, do little, spend less, and watch us all fight each other.

There’s a long way to go. Only yesterday a well dressed tourist whispered “God Rest Her”, as he watched B in the street. “She’s not f*ckin’ dead yet!” was the reply I wanted to give. Instead I smiled, because I’m sure he meant well, and he’d probably never seen or read about anyone like my disabled daughter before…

 

When you don’t realise what the problem is

I’m one of those people who can’t always identify what is upsetting or worrying me.

Something I thought was just a niggle turned out to be much more than that when I finally managed to overcome it this week.

I live in a big old house with lots of steps – only the well insulated extension is wheelchair friendly, so that’s where my severely disabled daughter spends most of her time when she is at home.

The worst time is at night, when I have to leave her downstairs and go up to bed. She seems so vulnerable down there on her own, even with an impressive array of alarms and locks and a baby monitor. But I was finding it increasingly difficult to get out of bed into a freezing cold room and stumble down two flights of stairs in the middle of the night to find out what she needed. Sometimes I’d do it over and over again. So I usually went to bed feeling stressed, slept with one ear permanently glued to the baby monitor and woke up stressed too.

Finally this week it proved possible to sleep downstairs, just the other side of the partition from her, and in the warmest room in the house.

So on Tuesday morning I woke up refreshed and calmer than I have in a long time. Of course life had other plans and I then got hit with three bits of bad news that day. But I coped, and that’s an improvement too.

Other reasons to be cheerful for this week:

B’s bus driver bringing in my bins for me. A wonderful random act of kindness that he does regularly.

The father of my lodger installing my new oven – so that Christmas can actually happen here (the old one gave up half way through baking a birthday cake in October).

My eldest daughter bringing chocolate home for me after a difficult day.

The GP telling me I didn’t need another scope just a higher dose of medicine, and it’s working too. Terrified of how I’d manage the scope with no respite.

A long overdue coffee meet up with a friend, and B came too.

A successful protest outside the Irish Parliament with my daughter and other disability advocates, but sadly very little media coverage.

disability-protest-leinster-house-december-2016

Publishing a great post by a disability advocate about Ireland’s failure to ratify the UN Convention on the Rights of People with disabilities on another blog to widen its readership. It was a great to help and feel useful and competent!

Bringing B to visit a community disability hub in a nearby town – a base from where a small number of people with disabilities can access community life, which is supposed to replace day services in Ireland. I also got the chance to properly meet an autism mum who I’ve always admired. More on the hub when I have time to write about it properly.

Coffee and cheesecake outside last Sunday with B.

I have decided that my Christmas present to myself will be to uncancel my cancelled gym membership. In my defence I did look at gyms that appeared to be cheaper and would be quicker to get to, but they were mostly grim and not cheaper if I was to get the help I need to keep going. This helped too ha ha!

Milon, ICON gym, .png

More Reasons to be Cheerful over at Lakes Single Mum who is hosting this linky for December.

 

Finding Allies in the Special Needs Battle

As a special needs parent you become an army commander fighting battles on many fronts at the same time. But you usually have to do this with no troops, no weapons, and little understanding of opposition tactics. Because the State and the organisations  that are supposed to provide services often seem to be the enemy, withholding information, refusing to engage, and denying the help that you believe is needed. So you may be ignored, patronised, discussed behind your back, punished and accused. And your children may suffer as a result.

About ten percent cent of the population have some kind of disability or special need so you would think that such a large army of people would have clout, that politicians  would care about the issues involved and would listen. Far too often they don’t.

But sometimes you do find allies.

And you know all those people who knock social media? Well they mostly don’t appreciate the opportunities it offers. Like the chance to help your family and explain the issues that affect your children. I got such a chance on Thursday, when myself and my disabled daughter went to meet Senator John Dolan in Leinster House (the location of the parliament here in Ireland). Senator Dolan is also the CEO of the Disability Federation of Ireland.

The meeting was about Changing Places, why children and adults like my daughter need them for toileting and/or changing, how providing them would fit in with current disability policy and also provide business benefits, as well as ways to encourage organisations to install them.

The Senator was very receptive, listened carefully and was lovely to my daughter (who wasn’t particularly impressed with being at a boring meeting!).

me-b-senator-john-dolan-disability-phantomloos-worldtoiletday
Where’s the chocolate cake and the music, Mum?

I also raised some of my concerns about how current policy seems to be ignoring the needs of those with severe and profound disabilities. And he listened once again. So I may have found another ally in my fight to make sure that my daughter – and others – have the best life possible.

And I can’t think of a better reason to be cheerful for this week.