Wednesday, 1 May 2013

BADD2013: Can or Can't Work, a Disability Dilemma

Today is Blogging Against Disablism Day 2013. For more posts visit here.

Despite huge advances in accessibility and support disabled people remain underrepresented in education and work.

According to the Office for Disability Issues:
19.2 per cent of working age disabled people do not hold any formal qualification, compared to 6.5 per cent of working age non-disabled people
14.9 per cent of working age disabled people hold degree-level qualifications compared to 28.1 per cent of working age non-disabled people
In 2012, 46.3 per cent of working-age disabled people are in employment compared to 76.4 per cent of working-age non-disabled people.

It is perhaps unsurprising then that while I was still working as a university researcher (and previously as a PhD student) I met what I would term "casual disablism" in the form of total disbelief that somone "like me" could do a job "like this".  

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 had the same problem at conferences. Another example is this conversation:
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?

I found the attitude from people at conferences deeply worrying. You have to understand that these were not only my peers and colleagues with whom I would work with on my research, but also my future interviewers for any job that I might apply for. If this was their attitude toward disabled people it did not bode well. This was semi-confirmed when I phoned up to confirm wheelchair access for my first important job interview and I was asked if "I was sure I was up to the job".

I have to say that there was a part of me which always found all of this rather strange, given the famous icon Stephen Hawking who is trotted out whenever anyone says they are too sick to work.  Either all disabled people are like him, in which case people shouldn't have been astonished to see me in my electric wheelchair, or he is an exception to the rule, in which case he shouldn't be used as a stick to beat people who are too ill or disabled to work.

So I'd like to move now to a dilemma this poses. I have a progressive illness which has got much worse over the years. I did my degree, PhD and worked for 5 years with increasing disability, but, more importantly with increasing illness, more and more time off sick, working from home, more and more part time and symptoms which interfered with my work. Eventually I had to call it a day and am now claiming long term sickness and disability benefit, ESA.

ESA and the test for claiming it (WCA) are deeply controversial and need much improvement. I myself have steadily been campaigning for this in any way I am able to. However, when fighting for improving this process, we need to be very careful not to reinforce the stereotype that all disabled people are unable to work or do high grade jobs. It is a very difficult and fine line to tread.

As I have had a very good job as a disabled person and as a very ill person I know that it is possible to 
a) work when very disabled
b) work when very ill
c) be too ill to work

When campaigning against welfare reform people sometimes hold up a specific example of a person who was refused their benefit to illustrate that the ESA process is flawed. I find this very dangerous as it risks reinforcing the disablist belief that every single person with that same impairment, disability or illness can't work.

I strongly believe that everyone should receive appropriate support. 

If they are truly unable to work then they should receive sufficient support to live adequately and not be hounded as they are now nor made to feel guilty or unworthy. Changing people's perceptions is key here. It IS possible to be too ill to work. Many people still believe for instance that if you can use a computer then you can work. I wrote about this in #BADD2012. The government itself would do well to listen.

If they feel able and want to work, then they should receive every bit of support available to do so, even if they are very ill or very disabled and regardless of whether or not they would "pass" the "fit for work" test to receive benefits. Indeed, I would have been eligible for incapacity benefit or ESA right from the start of my illness, but as I had a flexible job with a supportive employer, I felt able to work. I therefore did not claim it and instead received very good support to help me work instead such as Access to Work.
Therefore increasing funding and availability of Access to Work and simultaneously working with employers to increase their willingness to be supportive and flexible is crucial. But changing the perception that disabled people can't work or hold down high level jobs is also key. 

Juggling changing both perceptions at the same time is a complete and utter nightmare. But it must be done.


  1. I think your experience demonstrates very well the false dichotomies we have about illness and impairment in our culture. There's no nuance. People are sometimes surprised to learn how rarely I leave the house, yet others are surprised at what a busy life I lead, even though it's a life of mostly beds and sofas, with an awful lot of resting and sleeping.

    It's always lacked nuance, who can and cannot work - probably since the Industrial Revolution (before then, work and home was often the same place, and folks were more likely to have roles rather than jobs). But now, capacity to work is treated like it is an absolutely measurable thing.

    When transferred, I should get into the ESA Support Group simply because I can't mobilise 50m. But that's not what stops me working.

    Meanwhile, if I get my novels published, there's a small chance I may actually be able to earn a living, despite the fact there is no "job" that involved turning up, or working consistently from home, that I could ever do.

    Sorry, I'm not sure anything I've said here, makes sense, but thanks for contributing to BADD!

    1. It makes absolute sense.
      I too know that I qualify for the support group for ESA on the basis that I use an electric wheelchair. (Hopefully there won't be any problems with my current reassessment).

      However that isn't what is stopping me working. I did most of my PhD and all of my working years from my electric wheelchair. It did pose certain difficulties and I did encounter a certain amount of discrimination. It does restrict your job choices and makes finding a job more difficult.

      But that isn't what made me stop work. Yet I have no way of knowing whether those extremely nasty and disabling symptoms alone which make it utterly impossible to work would get me into the support group. Sadly I suspect not. It is one of the reasons I seek to improve the ESA process.

    2. "There's no nuance"

      This! So much this! It's actually a big part of why I was forced out of work. Using crutches couldn't possibly affect my programming work management claimed, to the point of dismissing specialist medical reports, so I must be incompetent or lazy. But needing crutches was a symptom, not the disability, and being in pain all the time definitely did affect my work. And even with that I could still have gotten the job done, it was demanding I hit daily deadlines, even though the project only had yearly ones, that did for me.

    3. Agreed. No nuance: but to hold a job of any kind, you have to be able to show up regularly, preferably at the same time of day, and do the job for a reasonable number of consecutive hours.

      If you are not predictable, if you can never tell if that will be the day you can do the job, you can't work.

      That's why writing which can be done when one has the occasional flash of clear brain, even if you get the clear brain more or less regularly by taking rests before, during, and after, is NOT predictive of the ability to do a "job." (see above)

      I am not predictable. Therefore, I'm not reliable. Doesn't matter that I have a PhD in Nuclear Engineering. I can't do the job, reliably, day in and day out.

      But I CAN write - when I can.

      Problem is the US Social Security rules, and the private disability insurance rules, which seem to think that if I can do the writing (finish a book I've been working on for 13 years) and put it up on Amazon, that means I can WORK.

      I would LOVE to work. I miss the heck out of it.


      So, for now I can't even TRY to publish - because it would be misinterpreted as my being able to WORK. And choosing not to.

  2. As ever a brilliant blog and one thing im still struggling with. My wish to work versus my abillity to sustain it.

    Its the Either Or approach that makes it extremely difficult to find the balance, in theroy the concept of Permitted work allows for a limted amount of work - but the fear that it would trigger a reasessment as im in the support group prevents me from trying.

    I firmly believe its must be a four way conversation and education, Government Policies and processes, Potentianl employers of all types supported and educated to look differently at their employees, Society, the media etc that investing in disabled and chronically sick people is worth it and disabled people themselves to aspire, feel confident enough to challenge and to be supported to take a chance..But ultimately we also need recognition that some people are simply too sick to work in any kind of conventional way if at all and thats ok too and they can still contribte to society in many ways..its not all about money

  3. I admire the sentiments you've conveyed here so much because you've really considered the paradoxical nature of work assessment and how it impacts upon individuals, and you recognize that the argument IS nuanced and not as simple as 'scroungers who claim DLA falsely and should be working' VS 'seriously ill or disabled people being forced back into work'. Each case is different and is the domain of the individual- capacity assessments are necessary in my opinion, and there will always be fringe cases where an assessment is inaccurate or somebody sadly takes their life because of the strain- however we cannot be held to ransom by sensationalism and exceptional cases which prevent us getting a true picture of how the disabled workforce can be considered in this country.

    What I like is that you recognize that we are in danger of doing those with disabilities a disservice by assuming they cannot work, cannot develop skills to work, and cannot be productive and accepted members of society. To suggest that needs assessments are in some way penalizing every disabled person in the country is not true- in my time working with hundreds of cases I've yet to come across a single person who's been forced back into work when they are clearly unable to do so- the only cases where there's been dispute have been resolved upon appeal. The process does need to be refined and improved as you say, but it's not inherently bad.

    What we cannot do is fall into the trap of thinking this is a 'good vs evil' scenario and that politicians are sending wheelchair users down mine-shafts as some would have you believe. Let's look at how we can find vocation and occupation for people with disabilities and consider new pathways to supporting them in the process where we can. Let's not expend time and energy trying to fight a process which ultimately seeks to seperate the real cases from those who are using the system entirely fraudulently. Let's start giving disabled people some credit and belief.

    1. Capability assessments are necessary, yes. But they need to be the right ones. At the moment I don't think they are and I think they are failing a number of disabled people as a result. It all depends on whether you have the "right kind" of disability or illness.

      Thus, I might personally be ok, but having been through the process 3 times already in as many years (another problem in itself) I can quite easily see how other sick or disabled people with very big difficulties could be let down and left without support, while still unable to work in any regular or reliable way.

      Part of supporting those who can't work is making sure that the test they have to go through to claim that support (and I do think there needs to be a test) is fair and will properly take into account people's symptoms and disabilities.

      As I said, we need to support everyone: those who can work AND those who can't.

      Sadly I will probably be claiming ESA or its replacement for some time to come. I will therefore have first hand experience of its assessment. Until I feel that it is fair and is working for ALL disabled people, I will continue fighting for it to be improved.

      However I will also continue to fight for support for disabled people who can and do want to work but are facing barriers to that.

      The two positions are not mutually exclusive and I believe them to be just as important as one another. I just wish more people realised it.

    2. I'm going to pick you up on three aspects of this:

      "there will always be fringe cases where an assessment is inaccurate or somebody sadly takes their life because of the strain- however we cannot be held to ransom by sensationalism and exceptional cases"

      I don't think having 1 assessment in 6 overturned at appeal really counts as 'fringe' or 'exceptional'. When I was doing Quality Control work we'd have been more likely to refer to it as an utter disaster. And as for dismissing suicide as inevitable or 'sensationalism', any suicide as the result of a government mandated process should face the same Serious Case Review that would be required if it happened to someone in the care of NHS, police or Social Services.

      "Let's not expend time and energy trying to fight a process which ultimately seeks to seperate the real cases from those who are using the system entirely fraudulently."

      Having been through the WCA and passed, but having found it so traumatic I dropped my claim rather than go through it again, I think we are very much morally bound to spend as much time and energy as we can afford fighting it. If I can be left traumatized by the way ATOS consciously mis-handled me, by a HCP who had clearly decided before I entered the room that I was a fraud, and who consistently rubbished my statements, right up until the point he realised just how much physical distress I was in, then what chance does someone with severe mental illness or a learning or developmental disability have?

      "Let's look at how we can find vocation and occupation for people with disabilities and consider new pathways to supporting them in the process where we can"

      Personally I'll find my own job, what I want from society are laws that prevent me from being discriminated against when I'm the best candidate, and a society that makes such discrimination not just morally unacceptable, but socially unacceptable.

    3. Forgot this one:
      "that politicians are sending wheelchair users down mine-shafts as some would have you believe"

      I don't know about wheelchairs and mineshafts (first find a working pit), but I can point you at a wheelchair user who was ordered to apply for a job as a scaffolder....

  4. Oh, that's nice. Have they found you a job in the office?

    I'd love to know who this mysterious "they" that find jobs for disabled people are.

    Not long after I moved here (when I was just mobility impaired, before I became too ill to work) I ran into my (now deceased) next door neighbour one morning as I was on my way to work. Apparently "they" should have found me an easier job that didn't require a 20 minute push to work in the morning.

  5. I think this 'all or nothing' attitude is quite pervasive in the States as well: our system is slightly different, but there is the same stigma ... It's a tricky balance, and I think you capture that well.

  6. I would love to see comparative figures for *post-graduate* qualifications in the UK.

    The Open University is 'open' to the 80.8% non-graduate disabled population, but *closed* to the 19.2% - no matter how desperately motivated we may be to pursue a post-graduate qualification.

    Non-graduates in receipt of means-tested benefits can take most OU courses for free, however THERE ARE NO FEE EXEMPTIONS FOR GRADUATES (and for anyone on benefits the courses are prohibitively expensive). The funding ban makes no concessions for sick or disabled individuals whose ONLY access to study would be through the OU.

    This is effective discrimination against disabled graduates, excluding us from academic life and sending us the message that we should be 'grateful' for the crumbs of our first degrees, and not hanker after more.