At the European Parliament Disability Intergroup, Strasbourg

Sisters of Frida

written July 14th 2013

Last week the Disability Intergroup* of the European Parliament met for the launch of a new report on Women and Disability prepared by rapporteur Angelika Werthmann (MEP). In her introductory speech Ms Werthmann explained the initiative had sprung from a (non-disabled) women’s group concerned to further include disabled women in their focus, but that for her  (and many in the womens group), disability was an entirely new subject so preparing the report had been a learning curve. Personally I felt a bit wary of what she might say initially, but  then before she expanded her presentation she made a specific invitation to Intergroup members and attendees to consider sending her further amendments which would be factored in the final publication.

Her report highlights the specific barriers to full participation and inclusion in society faced by disabled women, and was warmly welcomed by all attending…

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@CreativeCrip in the Media: Society Guardian 17 Jul 2013

I’ve been mentioned in today’s Society Guardian Daily regarding @FridasSisters & #CEDAW2013#disabilityUK #disability #DisabledWomen #cedaw13

You can follow the Sisters of Frida Blog here.

Day 2 Oral presentations to the CEDAW committee

Sisters of Frida

We set off in the morning with the IWRAW group by bus to the UN Palais de Nations. We were unable to go in with the others however because apparently we were not registered inspite of having the emails which said we should be. however we were not the only ones, Elizabeth Sclater, of the older women’s delegation was also in the same boat.

When we got our badges we went in and was in time to join the young people, Big Voices group to do the building tour. There were some impressive rooms.

More importantly we joined the others for lunch to discuss final details for the oral presentations.  We had about 10 mins in all for UK, and presentations were to be given by England, Scotland and N Ireland, Wales was not able to come. We were also given information about who was in the CEDAW panel and…

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Day 1 Meeting the CEDAW working group UK delegation in Geneva

Sisters of Frida

“No ability to exhaust domestic law renders CEDAW meaningless”  Cris McCurley from NE Women Network

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Disabled women in Geneva for the 55th session of CEDAW questioning UK government on women’s rights

The Sisters of Frida

Press Release

” It is essential that disabled women are represented in processes like CEDAW reporting as too often our experience as disabled women is invisible, this is an opportunity to change this and show how the cuts and legal changes are affecting us”

–  says Zara Todd, Sisters of Frida steering group member.

For the first time, disabled women (Sisters of Frida) will take part with other women’s groups from the UK in Geneva to address the United Nations Committee on the Elimination of all forms of Discrimination Against Women (CEDAW) so as to highlight the problems impacting on women’s equality in the UK and what our Government must be examined on, and held to account over, by the UN. This is a unique opportunity for women to raise the key issues they are facing with the UN and the eyes of the world will be on the UK and their progress on women.
Continue reading

Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.

It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.

I’ve had to make even more changes in the aftermath of dropping my ESA claim.

  • My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
  • Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
  • I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
  • When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
  • The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
  • It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
  • I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
  • I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
  • I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.

Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.

So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.

 

 

Musings: Lifestyle Change vs. Political Change and Disability

Just replied to a comment on my blog from a disability campaigner now owning that his focus is on “lifestyle change rather than political change” (I’m one of more than a few people with criticism of the BioPsychoSocial mantras being rammed down our throats).

This is my response:

“Again – lifestyle change for disabled people not born into privilege will not happen without political change.”

I still don’t want to live this life – the real world 2 months #afterESA

Today marks the point of no return for many disabled and ill people. An estimated 40,000 – 100,000 of those in our community who have worked will lose our Contributory Employment Support Allowance (ESA)  thanks to the new one year time limit railroaded through Parliament as part of the recent welfare reforms.

I’m one of them. Continue reading

Pat’s Petition: Update for 16th April 2012 via carerwatch.com

Let’s help Pat reach 100,000 signatures

Over 35,000 people have signed Pat’s Petition so far

 Have YOU?

Stop and review the cuts to benefits and services, which are falling disproportionately

on disabled people, their carers and families

Welfare reform – NHS – local authority budgets – legal aid – sure start – Independent Living Fund – Remploy – social grant fund

Please sign Pat’s Petition

 click here: http://epetitions.direct.gov.uk/petitions/20968

and

Share, Share, Share

  1. In e-mails, via social media, blogs
  2. Add to newsletters
  3. Ask family, friends, work colleagues, contacts
  4. If you are part of the Hardest Hit / Care and Support Alliances, send your members the details. This is a great way for those unable to attend protests to add their voices to the many others raised in anger. Request your staff to sign.


Please send a supporting statement to patspetition@gmail.com detailing the actions you’ve taken.

These will be added to Pat’s campaign blog

WE ARE ALL IN THIS TOGETHER

The Joint Committee on Human Rights also recently highlighted the risks regarding the rights of disabled people in their report, Implementation of the Right of Disabled People to Independent Living’. Also the Scottish Campaign for a fair Society, told the Human Rights Council of the UN that the United Kingdom Government is in breach of its human rights obligations to disabled people, their carers and families.

carerwatch.com