Dear Mr Cameron, from someone who's life is no life at all. #BADD2015

Dear Mr Cameron,
Last night on question time you said "a life on benefits is no life at all". I am upset, now I know I'm not your target audience, I have no intention of voting conservative, but for you to disregard my life just like that is plain hurtful. I think I need to tell you a little about it.

This is what makes you say that my life "is no life at all":
2009: My first claim for benefits was at age 15 (three years after the onset of my disability), for DLA.  Had an ATOS assessment. I was turned down and was subsequently awarded it at appeal a few months later.
2010: At 16 had to reapply. Again I was turned down initially, I had an assessment with an ATOS doctor and was still turned down. At appeal 2 years after the original claim I was awarded DLA.
2011: In the mean time my condition changed so I put in a new claim, had an ATOS assessment and this time I received a small award straight away, I was entitled to more but to scared of losing what I had been awarded to appeal. At the appeal for the previous claim this was changed so I was awarded a higher amount.
2013: age 19 applied for ESA. No medical (that's rare), after more than 6 months waiting (for the uninitiated, a decision is supposed to be made in 12 weeks at the time 6 months was at the time around the average wait) I was placed in the support group (the higher rate where you are not expected to work or prepare for work).
2015: DLA claim due to end in the summer I applied for PIP in February. After a stressful assessment (though not as bad as the ATOS ones) in received the decision this week awarding me the highest rates of PIP.

I have never worked. Benefits have been my only income, I don't expect that to change soon. I am one of those people who you said have "no life at all" . Based just on my income, on the information attached to my national insurance number, you have written me off. You have reduced me simply to the source of my income.  According to you I am nothing else my life has no other qualities, my life is not a life.
What my NI number can't tell you is what it's happening outside of my bank account.

In no particular order:
I am a university student (a politics student no less)
I am an activist
I am a Christian
I am disabled
I am a leftie
I am a volunteer
I am a democratically elected officer at my student union
I am a tweeter
I am a reader
I am a hugger
I am a listener
I am a thinker
I am a problem solver
I am a friend
I am a little sister
I am a big sister
I am a daughter
I love pretty things, flowers and glitter
I am a people person
I am an animal person
I am a letter writer
I love to cook
I sleep a lot (and I mean a lot)
I like to see other people happy, I try to make it happen
I need help to do, be and enjoy all of those things
I am a recipient of social care

Mr Cameron my life(which is not a life) is wonderful and varied and full. My life (which is not a life) is hard and complicated and needs a lot of planning. My life (which is not a life) is beautiful, and fun and exciting and boring. My life (which is not a life) is exhausting and colourful and full of love. My life (which is not a life) is a lot of things but I can assure you it is definitely a life. It is a life worthy of respect, a life that ought to be viewed as a whole not reduced to where I get my money from.

By characterising me as having no life at all you have written me off and those like me off as not worthy of your attention as voters, just as an object of scorn. You have used me as an example of the perils of social security, you have invited people to look at me and condemn my life (which is not a life), you have opened me up to ridicule and abuse. Sure there's always the get out clause "I didn't mean you, I meant all those other people" but how many of those other people are like me?* You don't know, the media don't know the public don't know because you don't care have decided that the only important information about us is the our status as claimants. For you people are either shirkers or strivers there is no in between and there is no possibility that people can be complex. People are one or the other, that's it.

Someone might start their adult life (which is not a life) on benefits by claiming carers allowance at age 16, they're not able to claim it under 16 regardless of the level of their caring responsibility.
Someone might start their adult life (which is not a life) on benefits by claiming tax credits because their pay is ridiculously low.
Someone might start their adult life (which is not a life) on benefits by claiming job seekers allowance because despite leaving school with okay qualifications they cannot find a job easily.Someone might start their adult life (which is not a life) on benefits for any other number of perfectly valid reasons.
For me and many others the reason I depend on benefits in order to live my life (which is not a life) is disability.
Guess what, all these lives are complex and messy and beautiful and hard. Their lives are all lives. You do not get to dictate who has a "life". That is not okay. You cannot say who's life is worthwhile and who's life is not. To do so is dangerously close to saying something else, it almost sounds like you're talking about who should get to live.

In truth though my life (which is not a life) could be taken as a social security success story. Social security benefits have meant I can make a contribution to society as my impairment and the disabling barriers of society will allow, without worrying about whether I can afford to eat.
Sincerely,
Someone Who's Life is No Life at All
Someone Who's Life is a Life and Worthy of Respect as Such.
Rebecca

*That's no judgment on the people who aren't like me, just a response to the comment I always get when I raise this issue.


This post was written for Blogging Against Disablism Day 2015 #badd2015 more BADD posts  can be found here.
I had planned to post a blog on housing but right now this is more important.

[The Blogging Against Disablism Day graphic, depicting a colorful grid, with each square showing a different colored stick figure person, like the ones for the restroom signs.  Some of the stick figures have mobility aids, and one of them is just a handicapped symbol.  At the top it says "Blogging Against Disablism"]

10 things you need to know about getting to uni as a disabled student.

This is not about getting in to university but actually getting there, jumping through the hoops and processes so university is actually possible once you've got in.
Where I use the words Disabled or Disability I mean anything that qualifies as a disability under the equality act having a "substantial" and "long-term" negative effect on a person's abilities. This includes both physical and mental illnesses or impairments.*

1. Get started early - everything is easier when you don't have to stress about getting everything sorted in time. I first contacted my home social care department in March about getting personal care at uni, it took until this week (Week begininng 25.8.14) to see a social worker. There is a lot to sort and a lot of it takes time to muddle through. It's never too early to start approaching people and gauging what support is out there.

2. It's going to be hard work - as much as nondisabled students may complain about having to jump through hoops to get into and to get everything ready for university as a disabled person you will have at least twice as many things to do. Just keep on top of everything (write a list if you're at risk of forgetting) and you should be okay.

3. Help is out there - the easiest way to get it is to disclose your disability on your UCAS application so the universities know to contact you about any support you might need straight after they make you an offer. If you don't want to do that though you can always disclose directly to the universities after you get a response from them.

4. Check out each university's provision for disabled students before you apply - that way you know what you're in for whichever one you get into. Honestly, I discounted some uni's because their campuses were too hilly!
Try to talk to disabled students who are at or have graduated from that uni and get their feel of things.
Contact the open day organisers in advance and ask to see some accessible accommodation if you're planning on staying in halls (they will show you the nicest, most expensive one!).
Speak to the folks from the disabled students office at the open day, take their contact details and ask them any questions you can think of. Ask what support they offer for students with a disability like yours.
If your disability is mainly physical then make sure to have a look at the Trail Blazers University Challenge report here and see how the universities on your shortlist score on accessibility.
Have a look around as many areas of the campus as possible to check for yourself if it's suitable for you.

5. Apply for Disabled Student's Allowance (DSA) - I was a bit anxious about this with the memories of applying for DLA and ESA (the replacement for Incapacity Benefit) fresh in my mind. If you feel this way then fear not! For me at least, the experience was completely different. One of the advisers at my university's Disability Support Office helped me fill in the form and the Study Needs Assessment really was an assessment of my study needs, not an interrogation.
They can help with all sorts of things (equipment, study support, help in the library, mentoring, taxi fares) so it's worth giving it a go even if you're not certain that you need any extra help.

6. If you need help with personal care at uni you will need to talk the social care/social services department in the area you live now - this one only really applies if you will be moving out of area for uni. If you will still be living within the same council area then ignore this one.
Because it is expected that students will return home out of term time they are classed as "ordinarily resident" in the town of their permanent address. More information about this is available here. Unless you live in a university town then expect you home social services department to be unfamiliar with this. I had to quote the information on the page I linked and then wait for a member of staff to look it up and ask their manager about it.

7. You can keep ESA whilst studying - but only if you receive DLA, PIP or a similar allowance. You have to register a change of circumstances as student maintenance loan counts as income. If you're on income related ESA it receiving a maintenance loan will probably reduce the amount of ESA you're entitled to. More information available here.
However if you recieve DLA/PIP/other and give Student Finance evidence of that any maintenance grant you are entitled to will be given as a "Special Support Grant" and won't affect any income related benefit you get.

8. If you are staying in halls be aware that many uni's adapted rooms are in the newer, more expensive accommodation - if the only rooms that are suitable for you are  more expensive than halls you would live in otherwise/halls you can afford you may be able to get a reduction on the rent. You need to talk to the accommodation office and the disabled student's office at your uni about this but it does qualify as indirect discrimination**. It is at the discretion of the university but all five of the ones I applied to agreed (in principal) that I would not have to pay the full rent if their accessible accommodation was more expensive than what I would have otherwise.

9. Make full use of the disabled students' office - the advisers there know what you're likely to need to do to get the help you need. They will be able to help you with things you're anxious about and put you in touch with the right people. They can also help to smooth the transition once you get to uni.

10. You're not alone! - Lots of disabled students go to uni each year and will have been through very similar things, look about on twitter and you'll be sure to find some! If you have any problems the National Union of Students is on your side. Most student unions have a disabled students' rep and nationally the NUS is trying to make life easier for disabled students. They're the folks to go to if you have any disputes related to your disability or ideas of how to improve things.

*Full disclosure, my disability is mainly physical so this post leans more towards physical stuff, I've tried to make it as inclusive as possible but not all points will apply to all people.
**Only providing newer/higher end/expensive accessible accommodation means that you have no option to choose something cheaper when non-disabled students do. Charging you the same rate as students who actively choose to live in pricier accommodation constitute's unfair treatment as a result of disability. I don't think it has been tested in court though so universities are not obliged to reduce the rent.

Hello Welfare Reform Bill induced anxiety

So this blog has been created as a distraction, trying to escape the panic that is being brought up by watching the House of Commons(HoC) Parliamentary debate on the Welfare Reform Bill (WRB).

Why am I so terrified? Well that's because they government are intent on systematically destroying the disability benefits that I may one day soon be forced to rely on. So far I am supported by my parents, child benefit (until the age of 19 same as someone in full time education) and a small amount of DLA at the wrong level (low rate care (LRC) & low rate mobility (LRM) which should be at middle and high rates respectively - but that's another story) - but one day soon, perhaps when I am 19, perhaps if I am no longer able to go to college I will have no choice to apply for ESA.
I have no NI (national insurance) and perhaps could be one of those young people who if the government loses their vote and the HoC keeps the Lords (HoL) amendment would have presumed NI contributions. I do hope to be able to work one day but the foreseeable future I have no chance, I barely manage 7 hours a week at college!
If (yes that's if) I got ESA I might be put in the support group - on my own assessment and that of my father (a benefits advise worker) I should go into the support group, however I know the system and I know ATOS medicals - the personnel who run the WCA (work capability assessments) are on the whole unscrupuless, they just don't care. And the WCA themselves are not fit for purpose a tick box system is not appropriate for complex conditions which so often effect people.

The change form DLA to PIP will be horrific for me too. Not only the anxiety in changing over but the difference in descriptors, the horrible assessments, I have had 3 face to face DLA assessments for as many claims (yes they DO happen) with ATOS doctors already I know what I am talking about. Each doctor has hurt me and lied on their forms about anything from how long they spent with me, to the level of ability I had and the level ability I showed them, or what aids and appliances I have and how much pain I am in. They judged my condition incorrectly, one even decided that it was entirely psychological which was definitely not her job (they are payed to comment on my level of impairment not diagnosis), they caused severe anxiety  and NONE understood the bundle of complexity and contradictions that is Complex Regional Pain Syndrome. If these face to face assessments must take place then why not with our own GPs, Consultants, Physiotherapists or Occupational Therapists who will be much more familiar with us, our conditions and much better qualified t assess us than a random doctor who sees you for between 20 minutes and 2 1/2 (in my experience).

I am still anxiety filled and waiting for the speaker to collate and declare the results of amendment 15  which continues presumed NI for severely disabled young people allowing them to get contributory rate ESA.

For now, Becca