Reasons to be cheerful – the simple things

It’s been another week of ups and downs, both of which have conspired to make me very late with this very important post with my weekly reasons to be cheerful. And yes it is important, it helps to keep me grounded and focused on the good things in my life, at least for while. It gives me a lift, and then I can tackle the problems. So here goes:

My severely disabled daughter B was very happy during the early part of the week helped by chocolate cake that she could pick up herself without it squashing into crumbs, and even a trip to Tesco was fun.

Got my van serviced, and despite its age, all it needed was a few new light bulbs. It got its annual wash and is now ready for the biannual NCT next week (the Irish MOT). Fingers crossed it passes.

My eldest daughter unexpectedly bringing me home a take away coffee on Friday. My eyes may have been moist. As I’ve said before: I hate crying, except when people are kind (or I’m grieving). Then I can’t help it. She also made me lunch, as it was a very stressful day, and I may write about that later.

You know I have a phobia of drilling, but I’m a dab hand with a screw driver (no sniggering please!) and doing little jobs like putting in door stops helps me feel more competent around the house.

Huge thanks to Fairview Parkrun, I really enjoyed my first time taking part, but I was beaten by a ten year old…¬†ūüė∂

That’s it for this week: head over to Lakes Single Mum for more happy posts.

 

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…

 

My PR career as a carer

It’s true that events management was not my favourite part of public relations. But organising my disabled daughter’s activities beats the mind numbing bum wiping and form filling parts of being a carer any day.

During the winter it’s a no brainer: there’s her adult programme during the week, and regular weekend activities for her and her brother. I’m on auto pilot preparing for them.

It’s different during the summer months: her club organises a summer project but there is still a¬†lot of event management required from me, as the only parent of a young adult who needs a wheelchair.

So I found myself sitting at the kitchen table on Wednesday morning organising our first trip on the urban train (DART) to an out of town seaside resort (Bray) to visit the Sea Life aquarium with our friends from the Rainbow Junior Arch Club.

9am – I checked all the following:
Disabled parking at or near the station
Working lifts at both stations
How to wheel the chair from the platform onto the train
Accessibility of the aquarium
Availability of a disabled toilet (no changing places toilets, obviously as they are still a novelty in Ireland)

9.30 am – Make a packed lunch for myself and B – in case we couldn’t find anywhere that served mashed food – though I have mashed chips in an emergency. Pack buggy with every conceivable item we might need. No point in taking the wheelchair because (a) the weather, (b) no portable tray (c) not enough storage and (d) only the buggy reclines so I can fix her up after she uses the toilet (I had to lift her on and off, and my back survived this time, but MY DAUGHTER AND OTHERS NEEDS MORE CHANGING PLACES TOILETS).

10 am –¬†Half an hour to help my daughter use the toilet (including hoisting), put on a fresh nappy, get her into her outdoor clothes, and wheel her outside and up the ramp into the car. Phew!

But it was worth it.

Collage of B, Day trip to Bray, Sea Life,

We both loved the DART – I’d never done the scenic journey from Clontarf to Bray along the coast, and I felt like I was on holiday with friends: B loved it too, and was so enthusiastically loud and we got so many glares that I resorted to getting out the Jaffa cakes to quieten things down a bit!

Sea Life kept up occupied for about an hour – the aisles are very narrow and there were occasional buggy traffic jams, but our visit also coincided with shark feeding time, and that meant we had the place for ourselves for a while, which suited my daughter better as she could see more (some exhibits do not have glass walls and those were no good for her).

Coffee and a walk followed, and then a very happy trip home.

The previous weekend involved even more planning, but at least we went to familiar places: a Saturday walk into town and a visit to a new cafe, that could become a favourite as it offered cheesecake, a roomy disabled toilet and music Рbut not too loud.

Sunday involved two trips, complicated by the matches at the nearby sports stadium, that involved me parking in the middle of the road to move the bins that blocked our parking space each time we came home so my daughter could use the toilet.

In the morning we went for our second run with Rabbits and Runners, and B loved it even more than the first time, if that’s possible!

The afternoon saw us dodge the showers at the Hotter than July World Music Event – and I’m sure you’ve noticed by now how much we both like live music events, even better when they’re free.

There’s a bank holiday weekend in Ireland starting tomorrow, so the event planning for my daughter has begun already.

So you could say I didn’t give up my career as a PR when I became a full time carer. I still use the same skills, but for the most important client I’ve ever had: my beautiful daughter.

And that’s my reason to be cheerful for this week. Head over to Lakes Single Mum for more.

 

Facebook Overload

Social media seemed like this new bright shiny exciting toy back in 2008 when I first joined Facebook. Reconnecting with old friends and making new ones from all around the world. Sharing parenting woes, discovering new strategies, learning about rights and entitlements for disabled children, and how to claim them.

But in recent years that shiny toy looks tired and shabby.

Last week I looked at my Facebook feed and I couldn’t see any posts by my friends. Instead it was a confusing mish mash of ads, news items, and posts by people I don’t know in groups I forgot I’d been added to. ¬†I’m involved in so many groups and pages because I wanted to give back for all the help that was given to me. But it’s become overwhelming: that feeling that you have to help others every single day, or you’re a bad friend, a poor advocate. I know what I can do: I’m good at finding articles of interest to others, but sorting out the inevitable conflicts that happen on Facebook? I haven’t a clue. Wondering what to do has kept me awake at night, often over people I do not know.

So a year after I cut back on other social media, I’ve now cut back on Facebook too.¬†I’ve left most of the groups I used to belong to (apologies to all my friends who added me), and I feel better already. My feed is less cluttered with depressing posts by people I don’t even know, and instead I can see news from my friends and pages I’ve liked. Why didn’t I do this before?

I’m not sure what to do next, but there could be more cuts and mutes and blocks ahead.

Sorry Facebook, you’re overloading my life with too much cr*p. And it has to stop.