Dear Prime Minister,
It is with deep concern that I am writing in regards to the discriminatory proposed changes to Personal Independence Payment (PIP) and other disability benefits. These changes have the potential to have a devastating impact on the lives of disabled individuals across the country and add to the stigma that disabled persons have to contend with.
The proposed changes, which include cuts to benefits and stricter eligibility criteria, are not only unjust but also a clear violation of the rights of disabled people. A fact that the United Nations has recently focused on. Many in the disabled community rely on these benefits to meet their basic needs and live with dignity. In too many cases the available benefits are not enough to cover necessities, a problem that is only growing due to the cost of living crisis. By cutting these benefits, the government is effectively pushing disabled individuals further into poverty and isolation.
It is important to remember that disability in any form is not a choice, and no one should be penalized for something that is beyond their control. No disabled person should have to fight for help, nor contend with the government bringing in further discriminatory and ableist measures. It is the responsibility of the government to provide support and resources to those who need it the most, not to further marginalize and discriminate against them.
I urge you to reconsider these proposed changes and instead focus on creating a fair and inclusive system that supports all individuals, regardless of their abilities. Focus on enabling companies to create more jobs, including remote work, that is accessible and accepting of disabled people; the current scheme does not do its job. Disabled individuals deserve to be treated with respect and dignity, to be enabled to live a life full of opportunities, and it is our duty as a society to ensure that they have the resources they need to thrive.
I may only be a voice in a sea but I urge you to work towards creating a more just and equitable system for all.
Sincerely,
Rebecca Tunstall
Tag: benefits
Hormones and Chronic illness
Hormones, they hit us out of the blue in puberty and never stop showing up no matter how much we hope they may just skip a month. Even before my diagnosis of Dystonia my monthly visits from the witch were awful.
During my teen years my periods were unpredictable; sometimes not showing up for months and sometime arriving every two weeks. They would leave me doubled over the toilet in the night throwing up from the cramps, and going through a pad in under an hour over and over again. I spent years visiting my then GP who told me all this was normal and that I needed to learn to deal with these symptoms. It was only then when I was studying for my midwifery course that I had the courage to go to a new gp who recognised my distress and referred me to gyny. One operation later and I was diagnosed with Endometriosis.
Now my periods are worse than before and on average last 72 days. Yes you read that right. They last 72 days. Now normally they’d treat with a hormonal contraception to stop the period. Here’s where my health comes into play. My spasms, now I don’t know whether this is my Dystonia or EDS, but I can’t use any intrauterine device as the spasms physically reject it from my body which is fairly uncomfortable. The pill*/patch/injection all work on giving you progesterone however I am unfortunately one of those rare Ehlers Danlos suffers who can not tolerate this. The increase causes a dramatic increase in dislocations body wide.
*I am aware there are pills that are not just progesterone based however due to the fact I get daily migranes with aura I cannot take these as it increases my stroke risk.
Between the prolonged bleeding which leaves me severely anaemic (currently 3.1), the increase in spasms, dislocations, fatigue, it’s fair to say hormones really screw me over. So gentle hugs to all who also experience this. Remember chocolate always helps!
Disability Representation
Representative. That word means so many things these days. We are always on the look out for something or someone that represent us in someway that we identify with. It’s been a long time since I stopped feeling that word was applicable to me anymore simply because as much as the world has made so much progress accepting disabled people there’s some pretty ridiculous hold ups too.
In politics there’s lots of loud, worringly not always up to date privalged folk making decisions that impact the likes of you and me. I always dread when they discuss the NHS or disability benefits and wonder how much time they’ve spent speaking and really listening to its core users. I’ve written many times and often been disgusted by the response back which has so inadequate they’ve not even referred to my letter remotely accurately.
In fashion I struggle to find clothes that don’t physically injure me when putting them on. I’d love to see more disabled friendly clothes hitting the stores at reasonable prices. For those of you thinking just avoid the clothes that cause injury I do for the most part, but I haven’t found a bra yet that I can take on and off without dislocating.
Councils; I am honestly curious when you design pavements, who decides on drop curb placements? As a wheelchair user, with brain fog more days than not, I have to try to remember the best wheelchair friendly routes. These often involve laughable detours. I’ve been debating starting a ‘The disappearing Dropcurb album’.
Film/TV. All I’m going to say on the subject is start hiring the talented disabled actors that are out there for roles, rather than able bodied household names. You have no excuse, make the adaptations needed to facilitate.
Finally I don’t expect to see representation of myself everywhere, that’s not exactly what I’m getting at. After all one of the beautiful things about human life is our differences, our uniques, our quirks. However that doesn’t mean that we shouldn’t address the issues I’ve raised above and as we’re heading into 2021 these really should be non issues by now.
New Adventure
As many of you may remember in the summer of 2016 I attempted having a little part time job, this backfired on me when my employer refused to make reasonable adjustments and my body went into an extreme flair up. At the time this wasn’t too bad, but it did leave me pondering as to what I realistically could do. In February this year I moved in with my wonderful partner, now as you may or may not know such a milestone negatively affects benefits. I’d been on ESA for quite a while, but moving in with Dame left me £400 worse off each month. The government’s current system presumes that your partner can A) earn enough to be able to afford to be the sole provider B) Is happy to financially support you.
A £400 drop in my income was quite significant as you can imagine. So I’ve been wracking my brains as to what work I could do that wouldn’t leave me spasming and seizing in a hospital bed. I’d heard about Younique, a high quality skin care and makeup company that would allow me to set my own hours and work from home. In all honesty I thought it was to good to be true, but this week I took the plunge and messaged a fellow spoonie to get her take on the business. She spoke extremely highly of it, and knowing that someone in a similar health situation to me could make it work gave me home.
So here I am now. Today is the start of my 10 day online launch party, and I’m feeling incredibly excited by this opportunity. If you’d like to see what I’m doing then click on over to https://www.facebook.com/smilesparkleglow/. Fingers crossed that this adventure will be just what I need.
Dystonia and Me 