I don't have to believe them if I don't want to

Mum,

Another difficult night. Emmy has taken to staying up until 2am and I’m getting up at 7am to do her epilepsy meds so I’m once again in that state of perma exhaustion which I’ve come to know so well.

She was violent again last night the first appearance of it for 3 weeks which leads me now, when people ask how I am to reply “a good day for me is not getting punched in the face”

It was short lived and prompted by a big thunderstorm which brought her downstairs and under the skylights watching and unafraid. I was afraid though. I was worried and turned off the TV just like you used to and asked her to move from the window just like you used to. A tribute and a comfort which helped not at all.

You will have heard the same storm. Lying on your air filled mattress tiny and contracted.

I remembered when they were both born and the difficult nights then and you saying “just be glad of this time at least you know where they are at night”. We didn’t know then did we.

I miss you so much today that it’s making breath a little difficult to take.

I thought about those nights after Michael died when your grief shattered you. My gentle brother so like you in his temperament that when death approached him at 17 years old, on a ward full of old men he sent you for iced water.

You heard him die as you walked back. Just the two of you at the end as at the start and so you kissed him.

I still don’t know how you survived it. Was it for us your remaining children?

When your diagnosis arrived it sat side by side with Emmy’s autism. You moved from being Mum to child so gently. There was never violence.

I felt murderous though. I fought so hard to keep you. To force your neurotransmitters to keep hold of my face and my love. You said “They tell me it’s Alzheimers but I don’t have to believe them if I don’t want to.” Then a smile from a mother to her frightened child.

As a nurse you knew your journeys end.

So we walked together until you couldn’t walk anymore. You paced the corridors of the nursing home as you paced the garden at 2am in grief but then you were alone.

You let me go last of all and sometimes even now your eyes flicker, not with recognition but with a memory of recognition and it takes me back to you.

Laughing and comforting, as always.

Nicky x

10 things not to say to a parent

Ten things not to say to the parent of a learning disabled child

1) Why is she doing that?
2) Can’t you stop her doing that?
3) How do you stand her doing that?
4) You are very brave I wouldn’t be able to cope with her doing that?
5) Wow you look tired.
6) I understand exactly how you feel.
7) Yes well mine say “retard, mong, spaz and window licker” all the time you need to stop being so sensitive.
8) We’re all off for an activity that your child will find impossible and stressful are you all coming? Why not?
9) You have no idea how stressful my life is.
10) You don’t really make things any easier for yourself do you?

Ten things not to say to the parent of a disabled child

1) Well I’m sorry but they are disruptive in the classroom/theatre/cinema and we have to think of everyone else.
2) We didn’t think your child liked parties/sleepovers.
3) Oh isn’t that adorable they are so “special”.
4) Wow you look tired.
5) I understand exactly how you feel.
6) Oh they go to normal school?
7) Well your child needs to stop being so sensitive there is no bullying in this school.
8) I’m sorry your child simply does not meet our eligibility criteria.
9) I’m sorry but we simply don’t have adequate staffing levels for your child to be included in that activity.
10)You really don’t make things any easier for yourself do you?

Ten things not to say to the parent of a child with autism

1) So really its like dyslexia?
2) So what is their special talent?
3) No they’re not disabled where is the wheelchair?
4) Isn’t Rainman a wonderful film.
5) Oh all children do that you’re just being paranoid.
6) What that child needs is a damn good slap and better discipline at home.
7) Wow you look tired.
8) They didn’t have Autism in my day.
9) Do you think it was that MMR jab?
10) You really don’t make things any easier for yourself do you?

Did you hear the one about Heather Mills McCartney?

Anyone who knows me is familiar with the fact that I’m a fan of Twitter. Social networks in general but Twitter in particular. I can’t get on with facebook quite as well because I’m old and need things which are understandable within 140 seconds let alone 140 characters.

There has been much written about the evils of social networks but for someone like me it’s key. Disabled people and carers like me, can often find actual social networks spectacularly diminished so the accessibility of virtual online friendships is very comforting.

Unlike face to face relationships there’s no tedious explanation required.No value judgements placed on your face or figure(unless you choose to post this type of photo) no ill informed comments on your impairment or sympathy on the “burden” of your child’s disability.

You can be as anonymous as you wish. However that can also be the problem. Yesterday a news piece surfaced about Heather Mills McCartney.

She deeply polarises opinion it seems. I don’t know her, neither do millions of others but this didn’t stop them criticising her. My problem was that apparently in these days of equality the aspect of Heather Mills which drew the fastest and foulest “jokes” was the fact that she has a prosthetic leg.

The tweets and RT’s about her disability went back and forth. I became aware of it because Sally Bercow called for a halt when she tweeted a measured plea for this to stop. I checked out the hastag timeline which quickly established Heather Mills as a trending subject. The jokes were predictable.

Ironically it transpires that when the subject of hacking is one who is loathed, the morality of this dirty business of invasion of privacy becomes less clear.

Two people were harmed by this hacking Paul McCartney and his former wife. You may feel huge love and sympathy for the former and brand the latter as a gold digger, but that doesn’t provide justification for mocking jokes about her disability.

Tweeting this lost me followers. Tweeting this drew “well she deserves it” comments from people who know my feelings on disablist abuse.

No-one deserves it. The same people were disgusted by the treatment of disabled people bullied and physically abused in the Panorama expose of the private hospital Winterbourne View.

This mocking of Heather Mills disability stems from exactly the same place as that disablism. The fact that she was married to and then divorced from a national treasure is no license to mock her disability. In doing so you sanction bullying of all disabled people. There is no good disablism and bad disablism. It’s always wrong.

But I think it also calls us to re-evaluate again our knowledge and treatment of disabled people. Heather Mills whether you love her or hate her is a good example of how we want our “crips” and “carers” in nice tidy boxes.

Brave little heroes, stoic little carers.

Any deviation from the perceived norm is far too challenging for many to manage. With little exposure by our media to positive representations of disabled people, an increasingly narrow range of disabled stories being peddled as “misery porn” we are spoonfed the myth of disabled “victim,” benefit “cheat”, or “burdened” carer.

The truth is simple. The truth as they say is out there.

Some disabled people are nice and some disabled people are nasty.Some carers are nice and some carers are nasty. Disabled people and carers are just as flawed and fucked up and lovely and generous as the rest of us.

Disabled people and carers are humans, someone should put that breaking news on Twitter