Blogging Against Disablism!

So, it’s going to be Blogging Against Disablism Day 2014 in a couple of weeks. On the same day as my Important University Essay Deadline, May 1st.

I don’t know if I’ll be able to both write something for BADD *and* do my essay and I’m prioritising my essay. HOWEVER, I know that some years I didn’t participate in BADD because I didn’t have a blog or because I wanted to say something anonymously and didn’t have somewhere i could do that. Some years, other people kindly allowed me to post on their blogs so this year I’m offering to do the same.

If you’ve got something to say against any aspect of disablism (prejudice and discrimination against disabled people) from the perspective of any kind of disability, from anywhere in the world and you don’t have a blog to say it on, I offer you here. Message me through my contact page or on twitter *before* the first of May and I’ll try to set your words to be guest-posted on yetanotherlefty on the 1st of May.

Get well soon!

I keep nearly writing this post. Because people keep telling me to “Get well soon!”. I can tell they mean it kindly and even genuinely wish that I will become well. But the thing is… I won’t. I can’t.

I have fibromyalgia. Fibromyalgia is chronic (which is medical jargon for “long term”) and it is incurable. Almost no one ever diagnosed with fibromyalgia has ever spontaneously ceased to have it (as sometimes happens to people with milder forms of me-cfs which is a related condition). Basically, once you have fibromyalgia, you have it for life. I am going to be ill (and from time to time very ill) for the rest of my life.

I’ve described fibromyalgia here before in quite a bit of detail but forgive me for briefly describing it again here. I am in pain. My muscles and joints hurt all across my body, every concious second. Being touched, even gently, is painful. I take a lot of medicine for the pain but all it can really do is lessen it, soften it – not make it stop. So it’s often not strong or unbearable pain but it’s always there. It is both physically and mentally exhausting to live with constant pain. It leaves my muscles weak and fatigued and as a result I can barely walk unaided.

I will have to take pain relief daily for the rest of my life. I will likely always need mobility aids. I will probably always need other people to help care for me.

I cannot describe this as “wellness”. I am not well. I will never be well again.

I can and do live with that. I’m usually okay or at least at peace with it. I’m happy and I love my life and I cope.

But sometimes someone is well-meaning and kind and wishes me “Get well soon!” and the weight, the heavy, solemn seriousness of being incurably ill, suddenly bears down on me.

***

I wish people “Feel better soon!” because I don’t know what’s going on with them. Maybe you might want to consider adding this phrase to your vocabulary.

Addendum:
Yes, I know there are scientists working on cures. But they’ve been researching for 50 years now without yet working out what fibromyalgia *is* so I’m not holding much hope for a cure to be discovered, trialled, found to work *and* made available on the NHS during my lifetime.

3% – I get Adult Social Care

Apparently, three percent of UK adults get support from Adult Social Care. This interests me for two reasons: one, because I am one of those adults and two, because for as long as I can remember the Social Care budget has been cut, again and again and again. 

I’ve been receiving Social Care since September when my girlfriend and I made the scary but ultimately most sensible decision to live in different cities from each other after almost three years of living in the same room(!). I realised that my girlfriend had been increasingly acting as my carer whilst we’d been living together and that, while I wished it were otherwise, I was actually too unwell to look after myself. I need carers.
It was hard to admit because I am fiercely independent and live in a world that that associates “needing help from others” with “dependency”, “weakness” and “giving in”. Accepting help from non-family-members is often seen as a failure and a last resort. My actual experience of arranging and receiving care, however, has been a brilliant expression of my Independence, Strength and Resourcefulness – it has been the exact opposite of “giving in”.

I referred myself to my local council’s Adult Social Care Team via email. I was assessed for free loans of equipment (a bath board, two perching stools, a grabbing tool and a bed rail) that were delivered to my new home the same week I moved in. I met and talked with social workers who agreed a care plan to ensure I was guaranteed to get one cooked meal every week day and three showers a week. That also started the same week I moved in.

So, what’s it like?
After organising to change to a different agency when I was approved for long term care, it’s actually going really well. I know all the agency’s carers and they follow instructions. I’m completely in control of what happens – they just provide a pair of hands and some company. I was originally told that I’d only be able to have ready meals and I argued that wasn’t good enough – not least because I’m likely to need some help from others for the *rest of my life*. I planned various meals that could be made in 20 minutes or less and now I do as much or as little of the preparation as I feel up to and then a carer follows my instructions to make the food, makes me a cup of tea and does the washing up while I’m eating – and even makes the bed or puts my laundry to dry as well if there’s time. My carers enjoy spending the time with me and their free cooking lesson – I’ve got quite the reputation for interesting food and carers really do go home and try things they’ve made for me.

Without social care, I wouldn’t die but I’d become much more ill very quickly. At first it was very, very hard to accept that. Some days I can function almost “normally” but I can’t do it every day. Having help with cooking and washing myself means those activities are less tiring and I’ve energy left over to do things that I want to do.

Why do I get social care?
I’ve left this to the end but I can’t not include it. I know so, so many people who sound like they’re having a really hard time and could potentially do with help but don’t ask for it because they don’t think they’d qualify or don’t feel worth it or are scared like I was of giving in and becoming dependent. I get social care mainly because I am at risk of neglecting myself – I have little motivation to look after myself and left completely to my own devices would stop eating completely. That combines with me sometimes being physically unable to cook or wash myself. Both of these are recognised by my social worker as serious problems best solved by providing me with another person to help me cook and wash myself regularly – making it near impossible for me to self-sabotage by refusing self-care and a very, very clear record that it’s happening if I do. If I stop eating, someone *will* notice and my social worker will contact my GP. I have set up a system that actively prevents my depression from starving me.

I’ve come to view my care plan very differently from how society told me to view needing care. How can it be a sign of dependency that I arranged and co-authored a detailed plan of how to prevent myself becoming seriously ill? It’s not. Where is the weakness and failure in learning to understand, anticipate and work with my health needs? In pooling all available resources to ensure I can live the kind of life I want to lead? There isn’t any. 
I’m not giving in. I’m working out exactly what I need and using all tools at my disposal to ensure my health needs are met.

I’m likely going to write more posts on this and I’d also like to open this blog to submissions of guest posts on the theme of recieving adult social care – both positive and negative.

The World (Autism Awareness Day) is Not Enough

Reblogging because I totally agree.

I am autistic. I am proud to be autistic and I wouldn’t have me any other way,

Married, With Aspergers

Today is World Autism Awareness Day, twenty five years on from when it was first set up by the UN. Twenty five years of little voices being lost in our noisy world. There are days for this, weeks for that, months for the other; it’s impossible to keep up with them all. And the majority of people aren’t even aware.

Many Autism advocates and allies are campaigning for much more than awareness. We’re not content with awareness: we want nothing short of acceptance as our right. That is a worthy goal, but for me it still falls short. I have been inspired by tweets from my friend @SoniaBoue calling for Autistic Pride.

I am proud to be Autistic. It is an inseparable part of who I am. I want to celebrate my Autism, dance in the street and party, hang banners from the buildings and lamp posts. I want to…

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