Wednesday, 30 April 2014

#BADD2014: Support and Independence

This is my submission for #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. A second submission can be found here, and is an account of my time in academia.


Attitudes towards both what is and our rights to an independent life could possibly still be one of the greatest forms of disablism we can see in our society today. Despite great strides forwards our independence is still considered an expensive luxury to be given or taken away.

For the past 17 years I have needed "personal care". This has been provided via social services in a number of ways, at first through care agencies and later through personal assistants I pay via direct payments.

I will occasionally tell people that this support has allowed me to stay "independent". This completely throws some people. Some have even laughed in my face.
"How can you possibly be independent? You need help with basic things like getting dressed, washing, cooking, heck, even cutting up your food!"

I consider this a failure to understand what independence really means. I have always made my own decisions on every aspect of my life.  This includes the small things like what I have for dinner, what time I go to bed, or simply what I watch on TV or what I do for leisure or social activities. But it also includes the big things like what job I do, where I live, what I spend my money on, whether I go away for a weekend or holiday, and who I choose to have friendships and relationships with.

The fact I need help with basic tasks simply means I require support in order to remain in control of my life. And that is what I consider independence to be about: control, rather than trying to do every little thing all on my own.  Does it matter that someone else cooks and cuts up my food? No. What does matter is that I decide what I eat and (roughly) when I eat it.

Refusing to view me as an independent adult is, to my mind, a form of disablism. I am not considered a proper equal simply because I cannot perform a few physical tasks. Yet in every other respect and in every aspect that matters, I am living exactly the same life as everyone else. I have the same responsibilities and the same rights.

After all, to some extent everyone requires support of some kind, whether they realise it or not. For instance parents may be reliant on their child minders in order to go to work. Commuters may be reliant on their train or bus drivers. Disabled people are simply reliant on their personal assistants. The truth is that the difference between disabled and non disabled people is not really as great as people imagine.

Admittedly the consequences of removing that support are far greater for the disabled person than for the non disabled person.  Removing or even simply cutting that support could impact on the very basics of life such as hygiene, dressing and eating and would certainly prevent them from continuing many social, leisure or work activities.

This is why support is so crucial and must not be cut, even in these difficult economic times. It is vital that councils somehow continue to fund the support disabled people need. The price otherwise will indeed be our independence.

However, with council budgets being squeezed year by year,  care thresholds being raised, caps being placed on community social care, disabled children being described as "burdens", the ILF being closed down with no clear budget replacement, social care funds not being ring fenced and the rationing of care hours (eg only microwave meals allowed, women told to cut their hair to shorten shower times, only 1 shower allocated per week, removal of social activities help, removal of night time care in favour of incontinence pads, etc), it would seem that for many that price is not too high in the name of economy.
Apparently our independence is deemed a luxury, not a right.

Saturday, 26 April 2014

Mental Health Failings, a friend lost

TRIGGER WARNING: suicide, self harm
Scroll down for blog post.

A friend of mine died last night.
She committed suicide while in the "care" of a mental health unit.
She had been ill for a long time and had a long history of self harm and suicide attempts. During the past couple of years she probably spent more time as an inpatient than out.
Though I'm grieving, another overriding emotion is anger. This should never have been allowed to happen.

I had already been very angry at the care she received at a previous mental health unit.
When I visited she did not seem to be properly monitored.  Staff turnover was high, with many agency workers who did not always seem to know her needs.
Her treatment and medication reviewing was poor and sometimes postponed for over a week due to "timetabling".
She was once physically assaulted by another patient. Over another period of time she was regularly followed around by another male patient who developed a fixation on her. Staff did nothing about it.
While there she regularly "succeeded" in harming herself, badly enough to require serious ongoing hospital treatment.
She also "escaped" from the secure unit several times and then attempted suicide.

What kind of "care" is that??! If my friend wasn't safe in the mental health unit, then where could she be? What kind of "professionals" allow that to happen?

In later months, after my friend had left the area, the unit she had stayed in dramatically failed a surprise inspection and was threatened with closure as "mental health patients were put at risk". Among other things it was found that:
Drugs were “not always handled appropriately” while staff “did not always ensure that medicines were safely administered”.
Patients were “at risk of not receiving appropriate treatment to meet their needs” as vital care plans and risk assessments failed to ensure their safety and welfare.
In a way I was relieved. My suspicions were confirmed. But this surely meant that this was just one bad apple and that any future care she received elsewhere would be much better?

Now, in yet another mental health unit, my friend has once again been let down.
She wasn't properly monitored.
She wasn't safe.
But this time it won't matter what excuses are made.
It won't matter what "lessons are learned".
For my friend it is too late.

EDIT: April 2016

It is 2 years on. Following the death of Connor Sparrowhawk due to neglect while in the care of NHS trust Southern Health and the tireless efforts of his mother Dr Sara Ryan to uncover the truth behind it, terrible facts are now coming out.

An independent review was undertaken at the end of 2015. The Mazaars report found that the trust failed to report and investigate the deaths of hundreds of people with learning difficulties and mental health illness while in its care.

Following this, a CQC inspection was ordered, which Southern Health has spectacularly failed.

Among other things serious concerns were raised about the safety of mental health patients. 
For example, CQC had identified concerns relating to ligature risks in acute inpatient mental health and learning disabilities services in January 2014, October 2014 and August 2015. During the January 2016 CQC found that the Trust had still failed to make sufficient changes to address these risks with many potential ligature anchor points identified at one location.
The trust's chairman has resigned and the board and chief executive are now being called upon to stand down.

I'm not entirely sure how I feel about all this.  I feel I owe a debt of gratitude to Dr Sara Ryan for taking on the trust. I have followed her fight and it has truly been a David vs. Goliath battle. I know she was doing it for her son, but at the end of the day, she has also found justice for people like my friend too. Judging by the reports, perhaps hundreds of people.
More importantly, perhaps this will save future lives, and THAT is what is important.

Monday, 21 April 2014

#BADD2014: Academic Battles

NOTE: Since this was posted so close to May 1st, I am also submitting this post to #BADD2014, Blogging Against Disablism Day. Please do follow the link to read other blogs too. My "official" BADD2014 post can be found here.

Chatting and posting on PhDisabled has really made me think back to my PhD days. Many sick and disabled PhD students are struggling with many issues directly related to disability and illness which have a great impact on their research.

It was only when I started to share some of my own stories that I realised just how many battles I had had to fight. While my chronic illness was pretty well supported, as a visibly disabled student using an electric wheelchair there were huge needless issues ranging from access and "health and safety" to outright stereotyping.

In my last post I addressed how I worked through my PhD with a chronic illness. In this post I go through some of the many unnecessary battles thrown up during my time as a PhD student and beyond, showing that disablism is sadly alive and kicking.


Visible Problems!

Strangely, being visibly disabled was, for me, less well dealt with than my illness. This is despite the fact that you would have thought being a wheelchair user at the start of the twenty first century was no longer a big issue. The Equality Act 2010 was still a few years away, but the DDA had already been in place for many years.

Yet for instance I was at various stages banned from my own building, banned from the library (I was a "fire hazard"), banned from my office a second time for a whole 3 months while health and safety argued over whether I could bring in my portable oxygen.

Even when I eventually won the right to enter my own office I was placed under strict time restrictions due to my personal evacuation plan which involved 2 members of staff getting me out via the fire-proof lift. I could only be in the building if both members of staff were present.
Ironically, this evacuation plan would not be used in the event of a real fire as it would be "too dangerous" for said members of staff. I would instead be left on my own in the presumably burning building until the fire crew arrived. Kafkaesque? Yes. But true.

I was the only person in the whole department who, if renting a car, had to arrange my own private transport to conferences etc, paid out of my own private money and then claim it back months later. This was due to the fact that the university did not have a contract with a company which owned wheelchair accessible vehicles.

No one told course or talks organisers that a wheelchair user would be present. It was left to me to find out what courses I'd be doing, who was responsible for them, and to let them know about my access requirements. (This appears to be common and an unnecessary addition to a disabled PhD student's workload.) Unfortunately this was often repeatedly forgotten and talks had to be moved at the last minute.
This was not much appreciated and I, rather than the organiser, was blamed, as shown by emails sent to all staff saying
"Sorry for the inconvenience, we've had to change the room for the wheelchair user AGAIN!". 
Imagine how I then felt as we traipsed across to the other side of the campus in the pouring rain.

I was often the butt of annoyed "jokes" about this. The whole situation was unnecessary. I raised the issue of the emails, pointing out that information about the room change could be given without raising the question of wheelchair access, but was told that I was being "too sensitive".

During my time in the department a project was started with the installation of great new technology whereby several lecture theatres at different universities could be linked up via an IT network. A talk, seminar or lecture could be given remotely and followed at several universities at once, a bit like skype on a grand scale.
There was dispute as to which room this system should be installed in. To my horror I found out that a non wheelchair accessible lecture theatre was a strong candidate. 
I was appalled, particularly as due to deteriorating illness, travel was becoming more difficult and I intended to make use of the technology. I also felt that disabled academics are particularly likely to need this and in any case it would also be wrong to exclude us from any lectures given via this medium. This went not only for me but for any future students and members of staff as well.
This was eventually taken on board after I talked to several people, and the chosen room was wheelchair accessible. However this created some bad feeling due to the fact that it was smaller than its inaccessible counterpart and I received some nasty comments as a result.

Due to the age of the building a standard sized electric wheelchair couldn't get around, and so I used a smaller electric wheelchair when getting around during my office hours. I became the victim of bullying on the part of one particular person who took exception to the fact that my outdoor electric wheelchair needed to be stored in their larger open plan office. This person verbally abused me and even somehow physically removed my wheelchair and left it in the corridor.
Rather than address the issue I was told that person was leaving soon (in a couple of months) and perhaps I could work from home until they did. In the end I made arrangements with another colleague and left my wheelchair in their office. However this was both unacceptable behaviour and resolution of the problem.

Finally, I often encountered what I would term "casual disablism" in that people assumed that I was not a PhD student or a researcher simply because I was a wheelchair user.
It was very common for people to ask why I was in the university building where I worked. I distinctly remember one conversation (but by no means the only one):
What are you doing here, love, can I help you find the way out?
No thanks, I'm fine. I work here.
Oh, that's nice. Have they found you a job in the office?*
No, actually I'm one of the researchers. I'm on my way to my own office.
Really? I didn't think people like you could do that sort of thing
*Not that there would be anything wrong with an office job, but it was the "found you" (as though it would be "make work") and the belief that I couldn't possibly do anything else which was rather telling.
While I was still establishing myself as a researcher and people didn't yet know me, I also had the following conversation at a conference
Hello, are you lost?
Um, no. I'm the invited guest speaker...
Oh my goodness. That's amazing. You'd never think so, would you?
This was by no means the only example and is rather worrying when you consider what it reveals about fellow academics' attitudes.  This was semi-confirmed when I phoned up to confirm wheelchair access for my first important academic job interview and I was asked if "I was sure I was up to the job".

When I did finally graduate one final hurdle was set in my path. The university had 2 graduation halls. One was wheelchair accessible and the other not.
The university refused to guarantee that my ceremony would be held in the wheelchair accessible hall. I was told I would have to wait for the timetable (issued 2 weeks beforehand) to find out.
No one in my department was willing to help. No one seemed to think this was a problem and everyone just thought it was acceptable to "wait and see".  Yet while my fellow PhD students were eagerly making plans for the day, I was nervously waiting to find out if I could attend my own ceremony. I had to make reservations and rent out gowns etc without knowing whether I would be able to use any of it. As it turns out, I was lucky.
I made an official complaint about the process, pointing out that having an accessible awards hall does not make the graduation accessible if you are not guaranteed to have access to it! I do not know whether changes have been made. This is a typical example of how something can look accessible on paper but not in practise.

Later on, after my PhD, when I obtained a research fellowship I discovered that there were fundamental flaws in the application process for any future grants I might need which were discriminatory. I won't go into them here but it creates a strongly uneven playing field for disabled people who get past the early stages of an academic career.

Still worth it

Yet despite all these setbacks and fights, no one should lose sight of the fact that studying and working in academia can be hugely rewarding and for me was worth every single battle.

That said, I think academia needs to wake up to the fact that it still has a long way to go before it is fully inclusive and not rely on the fact that it is "better than 20 years ago". This may be so, but there are large improvements to be made, and with the recent cuts to DSA things look set to get worse rather than better.

My PhD with Chronic Illness

Chatting and posting on PhDisabled has really made me think back to my days as a PhD student.  Many current sick and disabled PhD students are struggling with issues directly related to disability and illness which have a great impact on their research.

I completed my PhD with both a very visible "disability" and a long term chronic illness.
The disability didn't really impact on my work but, surprisingly was horrifyingly badly accommodated by the university (I have written another entire blog post on the subject!).
My illness on the other hand had a very big impact on how I worked, but luckily I was very well supported by the university.

Adapting to Chronic Illness

The single most important thing was that I had a very good relationship with my supervisor and I made sure that he had a good understanding of my illness. This did mean revealing diagnoses etc. Not everyone would be comfortable doing this, but this was a choice I made and it worked well for me and the supervisor I had.

We had gone over in detail what I could and couldn't do.  He knew in advance that I would NOT be doing a normal working week and that there would be periods of time when I wouldn't do any research.

One thing I soon found is that there is no such thing as "normal" if you are sick.  I needed to forget about what everyone else was doing and concentrate on what worked for me.  It really didn't matter if I did things completely differently to everyone else. Different is never bad per se as long as I get where I need to.  Luckily I had the full support of my supervisor in this regard.

Split Office + Home Working:

My PhD was in Mathematics, so I needed no special equipment and technically could work anywhere. As one of my "disability accommodations", the university allowed me to work from home as much as I liked, even paying for a home printer, laptop and broadband.

When I was "well" or "as good as it gets", I still couldn't work all day. I always felt at my worse in the afternoon and it soon became clear that working at that time was simply inefficient.  Since I was definitely going to have to have time off and there is no official scope for that in a PhD (there is no equivalent to sick leave), I needed to make every single hour count. So I always worked when I felt at my best, regardless of what time it was. Conversely I didn't make myself work when I felt absolutely awful. The quality of the work was generally poor and I just made myself feel sick for longer.

So I started only going into work in the morning and coming home and resting or even sleeping in the afternoons. I would then maybe do a few hours late evening (eg 10pm-1am).
On the other hand I was often up at 3am in pain or with other symptoms. I soon found that that time could be put to surprisingly good use.  I took to jotting down ideas and/or reading "easy" research papers.
As time went on and my illness deteriorated I would alternate days I went to the office. For instance I might go in Mon, Wed, Fri and work fully from home Tues, Thurs.

I asked that most PhD seminars and teaching get timetabled in morning slots. This was mostly done and was of great help to me throughout my time as a PhD student. The location of said seminars was not always so well looked after, but I was very impressed with the way the university accommodated this particular requirement.

Conferences or talks at other universities were extremely difficult for me and I had to rest for long periods after. I worked from home for days after any such event. I went to less conferences and events than my fellow PhD students and as such these were carefully selected to maximise their use and impact.

Housebound: (12 months on and off)

Other times I was housebound but still well enough to do actual research (ie working on my own new original ideas). During those times I plugged away and kept in touch with my supervisor by email and skype.
Roughly 12 months of my PhD were spent this way on and off. These housebound patches were unpredictable. I might be housebound for a week here, a couple of months there and so on and so forth.

The biggest problem here was probably not academic but emotional, mental and social. The lack of contact at the office is obviously very isolating. Throughout my PhD I would always try to go into the office when I could, not really because I needed to for work, but because it was good for me mentally.
Luckily I pretty much lived on campus and was able to get a social life going by inviting people to my flat. This became a regular event with people coming round for lunch and evenings several times a week. This really helped prevent me becoming lonely and disconnected from university life.

Hospital and/or Horribly Sick! (8 months on and off)

There were also times when I was either in hospital or housebound but so ill that original research  just wasn't possible. Those periods were spent doing "background reading". Some of it was even undergraduate or Masters level. If nothing else it kept my brain ticking over. Roughly 4 months of my PhD was spent this way.
This might not have been so bad had it been under my control. The thing is that it happened at unpredictable times: a few weeks there, a month here, a few days there and this was extremely disruptive.

At least 4 months were spent in hospital/recovering and so ill that even background reading was impossible.
I was "lucky" enough to get a very good result (proof of a new mathematical theorem) quite early on in my PhD which meant that my success was pretty much assured from 20 months in. Therefore because things were going so well, my supervisor was happy to let me just rest until I felt well enough to start working again.
Thus I was not required to take a leave of absence, avoiding the bureaucratic and financial difficulties that many sick and disabled PhD students face at precisely the time that they are at their lowest.
I am of course very aware that I was extremely fortunate in that regard and that not everyone would be able to do this.

Success thanks to flexibility but at a cost

Working this way I was able to complete my PhD on time. I think the thing that got me through was easily being able to switch between my 3 different working modes: very sick (home background reading/hospital/recovery), sick (housebound but doing research and in contact via email/skype), "as good as it gets" (research by morning office hours+ home working, + occasional conference/talks).

However I recognise that spending an enforced 8 months doing background reading or even nothing at all, yet still finishing on time will not be possible for everyone. The subject I was doing helped a lot (no lab work + an early "result") and I think this was the deciding factor. I think I would have struggled far more in other subjects, however good I was at them and would have needed time off, with all the financial and administrative issues that entails.

Ideally there would be provision in the system for someone like me who is ill: ability to go part time, extra funding, etc. I would certainly have welcomed it and felt under less pressure. But there isn't. At most you can defer, but are left without funding or support.

Despite the fact that my PhD couldn't have been going any better, I continually felt very much that I was in a "sink or swim" position, and under tremendous pressure to "be well". Ironically this was likely to be counterproductive and make the illness worse. In the later stages of my PhD I had to keep reminding myself that things were going very well and I did have some leeway if I got sicker.

Additionally I was always playing "catch up".  I would be on target and then have a period of bad health and feel that I was behind again. My trick in the end was to try always to be slightly ahead if possible, (as long as I didn't make myself sick in doing so).

This came at a big cost. Although I did have time for a few social evenings as long as they took place at my own flat, most of the time every "useful" waking hour was spent working. The rest of the time I was resting or simply really sick. So although I was successful in the end, it was at great expense, sacrificing nearly all of my leisure time. I imagine this is something a lot of my fellow chronically ill PhD students can identify with.
I think these mental, emotional and physical burdens for sick PhD students cannot be emphasised enough. It is a huge addition to an already difficult task.

After my PhD, when I got my funding for my first research fellowship I did, in fact, go 75% part time. This finally took some of the pressure off at the times when I was very ill and unable to work at all. I also had some time to enjoy a more balanced lifestyle. Emotionally and mentally things became much easier.

If more people with chronic illnesses are to succeed then more part time work and study and the ability to flexibly slip between them should become available. This IS possible and the best example I know of is the one offered in the Dorothy Hodgkin Fellowships. I would love to see more research councils and universities offer similar schemes in the future.

Monday, 14 April 2014

Vital Disabled Student Support to be Cut. Save DSA!

Spread the word. Tell your MP. Write blogs. Let people know what is happening. We must try to stop this.
Share and Retweet this #ProtectDSA.

For further information please see this blog for a summary of the changes and a follow up post with suggestions on what to do about it.

After becoming disabled as a teenager, I went to university, obtained a first class degree, then completed a PhD.  While I worked extremely hard, none of this would have been possible without the support of Disabled Student Allowance (DSA), which covers the extra costs for equipment and assistance disabled students may require in order to study at university.

This is why I was aghast to learn that the government has just announced plans to cut DSA.
Couched under the language of "modernisation", "targeting funds at those who need it most", "fairness", is hidden the reality of an estimated 60 to 70% cut in funding.
At a time when Higher Education funding is at its lowest, the cost is being shunted onto universities, ill equipped and unprepared to deal with this.  This is a bit like suddenly asking employers to take over the funding and admin for Access to Work.

The government plans to make several key changes of which I will highlight just three:

1) DSA will no longer pay for "basic" computers and peripherals (even though required due to disability). This is justified by saying that "96% of students already own a laptop or netbook".
Bizarrely this assumption is based entirely on a marketing survey conducted by the NUS for the company Endsleigh in 2013. This was conducted by email and only reached 1704 students, just 1% of the UK student population. The proportion of disabled students who responded is not stated.
Given the repercussions of this decision one would have hoped that the government would undertake a full and proper analysis of the computer equipment privately available to disabled students entering university.

When I was doing my undergraduate degree, I was often too ill to leave my room. I was therefore unable to take advantage of the numerous public computers available onsite, often a mere 200 yards away.  A private computer was indispensable, due to my illness and disability and I would not have completed my degree without it.
DSA funded a private PC for me. BUT, it wasn't anything fancy and so under these proposals would no longer be granted.

I am certainly not unique.  The National Association of Disability Practitioners submitted a report to the BIS call for evidence in summer 2013 which explained in detail why disabled students may not be able to use the IT facilities provided on campus and justifying the provision of such equipment to disabled individuals where needed.

I very much doubt every single new disabled student arriving at university in 2015 will own a computer. What will happen to those disabled students similar to me? Will they fail where I did not simply due to a change in funding policy?

2) The government will only fund the most specialist support workers.
When digging a bit deeper this turns out to be bands 3 and 4 of the non medical help services.
This means that the following help will NOT be funded:

  • practical Support assistant
  • library Support assistant
  • reader
  • Scribe
  • Workshop/laboratory assistant
  • Sighted Guide
  • proof reader
  • Study assistant 
  • examination Support Workers
  • Manual Notetakers 
The government says it is encouraging disabled students to be more "independent learners". I feel they are completely missing the point of non medical helpers. They do not do the learning for the student. As much as is possible they enable the student to do the learning independently on the same level as any other student. 
While teaching staff should strive to make their teaching materials accessible, this does not remove the need for these support workers.
Likewise technology cannot always fully remove the need for all of these support staff. Try getting voice recognition software for advanced mathematics. Heck, we even use a special specific word processing program!

3) Students with Specific Learning Difficulties (SpLD) (eg dyslexia & dyspraxia) look set to be hit hard as they will only receive support "where their support needs are considered to be more complex". This by definition means that those with slightly less complex needs will lose all support altogether. This will have a hugely detrimental effect. 

One final comment: DSA was the first time I ever underwent an assessment of my disability needs. This was when I discovered that there were ways round some of the difficulties I was encountering. 
For instance I was having huge trouble using a normal mouse. I was given a trackball. Something so simple, yet it revolutionised my academic work and relieved a great deal of frustration!
The DSA assessment process in itself is hugely important and can help disabled students discover what would be useful to them during their time at university, be it physical aids, computer aids, software, support workers or proper supportive seating. It is a mistake to assume that disabled students simply know this. It is vital that this continue.

DSA is a hugely successful scheme. It has been praised by the National Audit office for recruiting and retaining disabled students. It is also effective. The Equality Challenge Unit (2013) statistical report shows a higher proportion of DSAs claimants attained a First/2:1 than those who did not receive DSAs.
These cuts seem set to undo all this and steal away the opportunities we enjoyed from all future disabled students.
The National  Association for Disabled Practitioners is calling to protect the support and the NUS has condemned the decision.

For further information please see this blog for a summary of the changes and a follow up post with suggestions on what to do about it.

Spread the word. Tell your MP. Write blogs. Let people know what is happening. We must try to stop this.

You can write to your MP online here.
Please also sign the e-petition here.
Share and Retweet this and use #ProtectDSA

Wednesday, 9 April 2014

Beyond Barriers: DLA and powerchairs

This post is written as part of the #BeyondBarriers campaign, launched as part of the release of the Spartacus Report "Beyond Barriers".
This research into ESA, WCAs, the Work Programme and employment for sick and disabled people proposes an alternative system under the vital principle of "Work for those who can, Support for those who can't".
This post is an example of how proper support can change your life for the better. In my case, DLA.
Stories from other disabled people can be found here.


The letter from NHS Wheelchair Services lay on the table. It was short and to the point and completely and utterly devastating. “As you can stand on your own and walk more than two steps we cannot provide you with a powered wheelchair at this time”.
I looked at my trusty manual wheelchair. As my muscle condition had progressed it had become more and more useless. Now, unless someone else was there to push it, it was nothing more than an oversized paperweight.

I looked out the window at the world denied to me. I was in the middle of my PhD. It was going well. I loved it. I had made wonderful friends among my fellow students and office mates. Lately though I had stopped going. I couldn’t leave the house. My legs couldn’t take me further than half way up the garden path and unless someone was willing to push me not only to work but around the office, even just to get to the loo, I was imprisoned at home.  As for such things as posting a letter, picking up something from the local shop or socialising, these were becoming a thing of the past.

How could this be? How could someone unable to leave the house without an electric wheelchair not qualify for one under the NHS? How could someone become housebound, not through illness or their condition, but because they aren’t given the equipment they require? Was I supposed to give up my PhD? Give up on my dreams of a job?

Well, I was lucky. This all happened just over 10 years ago and I had been entitled to High Rate Mobility DLA (Disability Living Allowance) for a number of years. My muscle condition was progressive and I knew it was only a matter of time before I would require an electric wheelchair. I was wary of wheelchair services and so diligently started putting some of my mobility money aside. It wasn’t too long after that NHS letter that I finally managed to save just enough to buy an electric wheelchair thanks to the vital additional help of some disability related funds from my university.

I did so and it literally changed my life overnight.  Rain or shine I used to go outside for the pure pleasure of being outdoors on my own!  I carried on socialising, becoming a regular at the local pub and member of our PhD quiz team once more! I was independent, not requiring carers or friends to go out and do things for me.  Best of all, I continued and obtained my PhD and went on to get a job in that field.  It is not too much to say that DLA changed my life.

Which is why I am worried today for all the disabled people in similar situations to me. Under the replacement benefit for DLA, PIP, I would not have qualified for higher rate until much later on. I would not have been able to save up to buy my wheelchair. I would have remained housebound. No life, no PhD, no job.