Safe Space

A couple of weeks ago, a new collaborative blog – Safe Space – was launched.

For the past year or so I’ve been unconvinced by the concept of “safe space” on the internet – a space where people can be free to share/be who and what they are completely without fear of abuse, hate, ridicule, triggers or trolling.  It seems like too big a goal both with how massive the internet and it’s trolling problems have become and the fact that for some people what is acceptable and OK can be what’s triggering, abusive or upsetting for others. Online (and in person) safe spaces are a worthwhile goal and one that is needed but the implementation seems problematic to me (especially when some communities like the disability one can’t even agree on what’s the correct language to use)

But I completely agree with the idea of Safe Space, the blog and I’m pleased that I’m going to be part of the team.

Jess, who founded the site wrote:

Here at Safe Space we understand that it’s hard as f**k being a girl. Periods, sexism and trying to put on eyeliner can be all in a days work.

Safe Space is a place where a group of women bring you posts about trying to hold their shit together. Talking honestly about mental health, feminism, sexuality and other important life stuff.

No judgment, no hate, because it’s already tough enough being a girl.

I’m going to be posting there every other Friday.  I had a fair amount of self doubt about doing so but the other writers are a  brilliant, friendly and supportive bunch who have been very encouraging and supporting. And I’m really enjoying the posts that they have shared.

The first week the site launched we each shared – What Makes Me, Me. That was a tough subject to write about as it needed more than a bio. But I think most of us found that.

Mine turned out to be a little different than planned. I had it written and then on my way home the night before I realised I needed to make a small tweak. Then when I logged online I saw an old school friend had died and ended up making more changes than I had planned.

What Makes Me, Me – Emma

My second post went live on the site yesterday morning. I spent most of the day out doing errands then having lunch with a friend in Oxford etc.  I came home to my twitter notifications full of really positive and encouraging feedback.

That post was about self worth and is called Because I’m Worth It.

 

Apparently people with mental health problems just need to “tell someone”

So Robin Williams has died.  Suicide.  And that’s sad as any death is.

Facebook is full of posts with his picture sharing phone numbers and websites of helplines.  Ones telling people that “suicide is a permanent solution to a temporary problem.”  And declarations that if you’re feeling down, if you have depression to make sure you tell someone.  Friend’s saying that they hope their friends feel capable of telling them.  And similar on twitter and other places.

Here’s the thing: I have a depression diagnosis and I have a lot of anxiety at times which has been recognised by medics although it’s never been given a label like GAD (generalised anxiety disorder).  It’s more than 11 years since one of my friends finally convinced me to go and see a GP about the way I felt.

I’d told someone.  I’d told her.  But she couldn’t physically make me go to the doctors and get help. She kept telling me I needed to and encouraging me to for at least six months.  I’d probably been depressed to a certain extent I had to do that myself (and unfortunately that meant things deteriorated because I didn’t go until I got scared about what might happen unless I did).

Then I went and told a GP.  It wasn’t my GP because my mine was a male and I thought a female doctor would be easier. It was a first step but it wasn’t the solution facebook seems to be suggesting it was.  Telling her wasn’t enough.  I needed her support but I also needed meds and I needed time.

That first type of antidepressants made me ill so I ended up telling most of my carers although I’d not meant to.  Several of them said “me too.” and I was shocked.  Telling people might have been easier if I’d known how common it was. I felt less alone.

I went back a few weeks later for review and I did tell my then GP because really I loved my uni GP because he also had CP and he got a lot of what I went through.  Over the years he’s been one of the few medics I’ve never had to convince that my depression isn’t caused by my CP. He’d seen me a lot in the months before for UTI and chest infections and I don’t know what else routine stuff.  And he apologised to me for missing my mental health problems.  It meant a lot to me but I wasn’t surprised and I didn’t blame him.  I’d hidden it.

And since then over the last 11 years I’ve been on and off of antidepressants.  I’ve told a lot of people about my mental health.

I’ve told friends.  Family. Doctors, counsellors, social workers. Carers and some other people too.

Sometimes it helps a lot.  Sometimes it helps a little.  Sometimes it doesn’t help.  And unfortunately sometimes it makes it worse.

I’ve had the response:

That I’m being silly

That I just need to stop taking antidepressants because they “are addictive and bad for you.”

That of course I’m depressed because I’ve got CP, what do I expect?

That things that have triggered bad times are in the past and I need to move on.

That I’m worrying about nothing

This too will pass

“you think you’ve got it bad I’ve blah blah blah” from a friend who kept telling me to tell her when things were bad.  She still does that now and she gets annoyed if she ever finds out I’ve not told her stuff.  But I’ve never, in more than 11 years since diagnosis been able to have a conversation with her about my mental health problems without it immediately being turned into something all about her.

Offering to listen and encouraging me to tell you about my problems is huge.  But I need you to actually listen.

How could you help someone in a mental health crisis:

Don’t use cliches like this too shall pass or the one I keep seeing today “suicide is a permanent solution to a temporary problem”.  Robin Williams had been undergoing treatment for various mental health conditions for over twenty years.  He had a real, serious illness not a temporary problem.  Calling it that belittles his suffering.

If someone tells you don’t try and make them tell you exactly what it is they have to be depressed or anxious about.  Mental health conditions can and do defy explanation.

Also, don’t make assumptions about causes.  I’m sure some of the counselling I’ve had would have been more effective if I’d not spent so much time trying to get it though the counsellor’s head that the fact I can’t walk had nothing to do with my mental health. The assumptions of a supposed link between my physical disability and my mental health condition make it harder in fact.

Only make offers of support that you genuinely mean.  If someone offers me the chance to talk but then tells me all of their problems rather than listening when I try to take them up on it I usually end up feeling worse because I feel alone and I’m worried about my friend.

Support takes different forms for different people.  I have issues with medication compliance.  Someone demanding to know everyday if I’d taken my meds (something one of my carers tried) didn;t help me.  But when I had a friend who was also struggling with med compliance we would tweet each other and check in every day or two sort of “I’ve managed my meds today, how’re you doing?” that really helped.

Don’t try to force a particular therapy or drug on someone.  Fluoxetine might be really great for people who have depression that worsens around their period.  I was on fluoxetine when I first started raising that issue and it didn’t help.  Sertraline did but all I kept being told from medics was “fluoxetine is good for that, perserve” until finally one switched me to sertraline for another reason.  Friends told me fluoxetine was good too.  It was good for me but it wasn’t the answer.

Just because you recovered doesn’t mean I will.  I care about how you’re doing but when I’m really struggling telling me that I only need six months of antidepressants doesn’t help.  And actually, the standard treatment isn’t six months of antidepressants.  it’s treatment until condition improves and then for another six months to ensure no relapse.

If the person in question is able to lead you in what support they need try to follow them.

But don’t, ever just tell someone to “tell me” if you have a problem and expect that to be the answer.  It’s a first step that you can take to helping them.  Telling you is a brilliant first step for the person with mental health condition.  But living with/treating/recovering from/whatever a mental health condition is a long, long journey.  And it needs more than that first step of talking about it.

You Know You’ve Got CP When…

…the shoes you call your ridiculously impractical shoes are the same sort as your able-bodied sister and mother frequently wear as sensible everyday ones.

For years I’ve lived in trainers. But only a specific sort. So much so that the pair I have now is at least my third identical pair but come to think of it is probably actually my fourth. And I should probably buy a new (but still identical pair) because no matter how many times I look for something different I can never find it. The idea that Skechers might one day discontinue them secretly fills me with horror.

Because no one else does shoes which
Are supportive
Undo completely and very easily
Have no form of heel
I can wear without socks regardless of the time of year
And are deep enough to accommodate my often very swollen feet.

Its no secret that I’m not a fan of shoe shopping and that shoes hold no real appeal for me. The more often I can go barefoot the more I like it.

But a few weeks I went shopping. I needed new black trousers and I was beginning to think a spare pair of Skechers would be an idea. My current pair probably have a few months wear in them at least but having worn my last ones until they fell apart and then for several uncomfortable days after as I literally had no others, a spare seemed a very good idea.

So I’m in Evans getting trousers (and an unplanned but gorgeous top) and I’m looking at shoes because you never know. And I spot a lovely pair of ankle boots.

Several years ago when I was at uni I did have a pair very similar I wore often. My shoe related issues weren’t quite so extreme then but you know it’s still possible…

So being that I’m unable to try shoes on when shopping I check if I can return them if they don’t fit then buy them. And I don’t want to try putting them on myself first in case they don’t fit (my unusual shoe putting on techniques can batter a bit which isn’t good if I’m returning them). A quick phone call to my sister telling her I’ve bought completely unsuitable shoes follows.

She asks in what way they’re unsuitable and I’m like
“They probably won’t fit but even if they do I probably won’t be able to get them on myself and even if I can I probably won’t be able to transfer in them.”

And she’s all “oh in pretty much every way then.”

I popped up to see her and she informed me they aren’t shoes, they’re boots. And then helped me try them on and surprisingly they fitted. They didn’t quite zip up to the top but its not an issue.

Eventually a long while later I sit on my bed and try them myself.

It’s sort of like
I know they fit.
I know how they should go on
But I can’t work out how to put them on cripple style

And as much as mum told me to take them back I’m keeping them. Because every girl needs a pair of ridiculous shoes. Even if they are meant to be the sensible type shoe.

(I was going to end this with something I’ve heard a lot which is that every girl should have a pair of shoes she loves but can’t really walk in. But you know in my CP world that’s pretty much every single pair of shoes I’ve ever owned so I thought it too obvious).

Inspiration Porn

Tonight is the yearly Children in Need appeal here in the UK. BBC One is taken over by a telethon for about seven hours. The idea is to raise money to help disadvantaged children. So you see video clips of children from other countries walking miles for water, young carers helping their mum or dad and disabled children doing things too. And it’s a given that those children will either look sad or have their story told using emotive language such as “suffers from…” Or “whilst other children are playing little Johnny must…”

Interspersed with those clips are famous people doing silly stuff, frequent updates on how much has been raised and brief mentions of members of the public doing sponsored silences. Locally a lot of schools have had PJ days to raise money. Those can sometimes be funny and a child I was a big fan of Children in Need.

Now? I hate it.

This is what’s known in disability circles as “inspiration porn”

Inspiration porn is something which is designed to highlight the differences disability brings and invoke pity. In some cases this pity is to raise money for charity, in others it’s to encourage people and sometimes it’s designed to make them think. It’s a bit like the ultimate embodiment of the phrase “there’s always someone worse off than you”. I am disabled and therefore, automatically, my life is terrible, I am an object of pity and you have it much better than I do.

The phrase that will be heard a lot on telethons is “can you donate to make a difference to a child like little Johnny” invariably after they’ve just told you how terrible his life is. The inference being that if you can’t you obviously don’t care about him.

It’s the picture doing the rounds on Facebook with the “the only disability in life is a bad attitude.” Attitude is huge. But I can’t put on my Bolshie face, wheel up to the local shop that doesn’t have wheelchair access and stare the step down until it magically turns into a ramp and lets me in. And as much as I do my damnedest not to let my CP stop me that doesn’t make me amazing and I’m sure as hell not inspirational. The idea behind that I believe is that it makes nondisabled people think “if she can do that with all she goes through why am I moaning?” And such like.

Or it’s the advert at the train station which shows a little boy in a wheelchair with the phrase “he wishes he could leave this behind too.” And the details of how to donate to one of the disability charities. Because clearly he’s trapped by his chair. The idea as with all of these is to make you pity him. Only when I saw that poster I was sat in my wheelchair. On the train as it pulled out of the station. Fail.

Disability does make me different to other people. Wearing glasses makes to me different to other disabled people. The fact I like to dye my hair, live alone and am a big NCIS fan makes me different again from other glasses wearing disabled people. It’s a fact of life and a characteristic of me as any other for anyone else in the world.

I knew, growing up, that at least one of the organisations I was involved with had received money from Children in Need (although I don’t think it was ever featured). But I never realised that I was one of those kids. One of the ones who were shown “leaving the confines of their wheelchair behind for an hour once a week whilst they ride a horse.”

I’m glad I didn’t realise. It took me a long time to become the vaguely confident outgoing person I am now. It would have taken longer if I’d grown up with the knowledge that my life meant I was an object of pity who needed charity lives a terrible life and who is held up to others as a reason why they’re lucky. Because obviously the fact I survived being deprived of oxygen at birth at a time when the medical world wasn’t as developed as it is now means I’m terribly unlucky.

More than your charity I want your support. And for me that comes from being treated with respect. From people recognising who I am and my individuality, not making assumptions and letting me be me. That’s going to make more of a difference to more of those “children in need” then all the money donated in it’s entire 30+ year history.

If you want to help people donate direct to organisations and bypass those events that thrive on making people feel bad.

See the girl, see the truth, see the life. Accept me and those like me. I’m here living me life. Like you I’ve only got one shot at it and I don’t have a choice but to do what I do. I’m here to enjoy myself, not to inspire you or be pitied. Open your eyes and say no to inspiration porn.

Quote

Quitting is not giving up, it can be choosing to focus your attention on something more important. Quitting is not losing confidence, it’s realizing that there are more valuable ways you can spend your time. Quitting is not making excuses; it’s learning to be more productive, efficient and effective instead. Quitting is letting go of things (or people) that are sucking the life out of you so you can do more things that will bring you strength.”
~ Osayi Osar-Emokpae.

♥ Emma

>Slipping a bit.

>This week I am up two pounds.  Which is a little disappointing although I’m not really surprised either.  This past week probably hasn’t been the best it could have been in terms of healthier eating etc but it wasn’t horrific either and I’m still not drinking Coke or eating Chocolate so that’s definitely something.  To be honest I was probably due for a bit of a blip around this time because I’ve been doing what I’ve been doing for 11+ weeks now and I probably need to shake things up now.  In a way I’m surprised I haven’t plateaued a bit before now.

Plans for this week are to really push the water as I’ve been drinking a lot of squash, ribena and diet lemonade lately. Try to use Just Dance everyday (I love that game so much and am really pleased that Just Dance 2 is coming out this year!) as I didn’t really manage that this week.  And cut down on my snacking.  I don’t snack anywhere near as much or as often as I used to but it is creeping back up a bit if I’m honest.

And speaking of honesty I must admit that I am fed up and stressed out at the moment.  After tomorrow I have a pretty good break coming up for the next two and a half weeks (which I’ll blog more about tomorrow or Thursday) and I have to say it’s very welcome.  As I walked back from the bureau yesterday all I could think was how good it was going to be to chill for a while and take it easy.

>”It’s my fault, I’m really sorry.”

>Someone made a pretty big mistake today. One that affected me pretty badly.

But then took the time to put there hands up to me and say “Emma, I’m really sorry.” and to admit to me that it was their fault. He looked me straight in the eye and went “I spoke to Julie and she told me she’d got you on the train but I just forgot to come help you off.” He told me he shouldn’t have forgotten and that it wasn’t good enough.

By the time I had been to Reading waiting for a train back and gotten to my sleepy little town he’d arranged for a wheelchair accessible taxi to meet me (no mean feat in my sleepy town where they are like gold dust) and it was there waiting. And he’d arranged for it to be paid for by the train company.

I live literally ten minutes walk from the station. I told him it was pointless, no need. But he was insistent that I took the taxi home. He stood there saying “it’s my fault” and variations on “sorry sorry sorry” as the driver clamped me down. And he told me that he wished he could do more to make it up to me.

I went “actually, you can. These things happen stop apologising and shut up!”

We laughed and off the taxi went.

I was an hour and a half or so late getting home. And I will complain about that. but more so about the fact that on that train type the “emergency call” buzzers are set in the ceiling and as a wheelchair user I can’t reach them when I need them.

I really, really, respect the fact that he had the nerve and the confidence to admit to me. To say that he forgot and that he’s sorry. And he meant it too.

I’ll tell the train company that.

And I’ll tell them about the train manager on the one I got stuck on. I never saw her until after I should have left the train. She got me sorted out and off of the train in Reading. And even though I was then with Gordon (who does journey care there and who I know well) and I was fine she insisted on waiting with me and traveling to my sleepy station with me to be sure I was ok. Her shift was over. I never got her name but hopefully if I tell them the train times etc they will know who it is.

Gordon waiting with me the entire time I was waiting to (they usually go and do other work). He told me it was great to see me but he wished he hadn’t. We laughed.

With both of them I insisted I was fine. She could leave me and as long as he came back so could Gordon. They refused and they stayed.

None of that makes what happened today okay.

But it goes a LONG way towards helping.

Particularly the person brave enough to own up to forgetting and to apologise. I’m annoyed but I also have huge respect for him and his honesty. I don’t think I could do that.