Deceptive Appearances

By Ken Davis

You've seen the drama. Today Tonight secretly films the woman with a back injury lifting groceries out of the car. Outraged citizens stick abusive posters under the windshield wipers of Disability Parking Permit holders who do not look disabled enough. Doctors smirk behind the backs of people who are so impolite as to not fit comfortably into a statistically defined diagnostic box. We all make judgements on limited information. It's one of the skills that allows us humans to do so well. Yet our judgements are frequently wrong. This is particularly so in the realm of work capacity – where wrong judgements can make the difference between a meagre existence and downright poverty.

Newstart Allowance was originally designed to be a SHORT TERM safety net for the newly unemployed while they go about finding a new job. It is the lowest level of Income Support in the OECD and well below any Poverty Line. Disability Support Pension (like any Pension) is designed to provide a meagre living for those unable to work full-time. Like most benefits it is means tested and decreases as someone earns income. Strangely, the Government sets the criteria for eligibility at a work capacity of 15 hours per week, however, once qualified, you can work up to 30 hours per week. I'll leave that anomaly for another time.

The major anomaly is the impairment tables which have been redesigned to make it almost impossible for some categories of applicant to attain 20 points of impairment, even if it is clear their work capacity is 15 hours per week or less. This is particularly the case for disabilities which are dynamic. A blind person's blindness is (largely) fixed. It doesn't matter what they do, their vision impairment remains the same. An amputee's amputation does not change. Paralysis is static. However much disability is more fluid. Conditions like chronic pain, Multiple Sclerosis, Chronic Fatigue Syndrome and mental health disorders are less predictable.

The fact that somebody can do something once, in an assessment (or on a hidden camera) tells little about the total reality of that person's life. Yet assessors and bureaucrats frequently make life altering judgements on the basis of one-off observations. They ignore a holistic assessment of a person's realistic work capacity. Worse still, the Social Security Act makes no allowance for job market conditions. If you can work 15 hours per week in a mythical job, it doesn't matter that that job doesn't actually exist. It doesn't matter that you have no hope of obtaining it above the other 100 able bodied applicants who need no special provisions. It doesn't matter that you would need to somehow move across the country away from your established medical and social supports. So even if you have this magical 15 hours per week of “full-time” work capacity – you are condemned to a life of Newstart poverty. Despite two Governments worth of disability bashing brutality and “dignity of work” rhetoric – nothing has changed. People with disabilities are still no more likely to obtain work, but far more likely to be living in Poverty.

In my case, I have chronic fatigue syndrome. It has been around for 20+ years and it's not getting any better (although I manage it much better now). If you followed me round with a camera (and edited the footage), or stalked my Facebook, you would know that I go surfing, mow the lawn, and walk around the shops in addition to my 15 (actually in reality its about 12) hours per week of work. I would be the perfect Today Tonight Disability Bludger Stooge (despite the fact I am actually working to my capacity).

But what's the reality? My “Surfing” is actually 15-60 minutes in the water, of which most is floating, interspersed with short bursts of anaerobic activity (the most suitable activity for many people with CFS). It's on a bodyboard in small surf conditions of 1-3 foot. I'm not riding giants at Nazare! I do it a few times a week (sometimes with long breaks between). I mow the lawn in 3 lots of 5 minutes (with 15-30 minute rest breaks in between). I shop, but it doesn't get put away until the next day. I balance my activity carefully, but need a lot of rest to recover between activities. A five hour work day leaves me exhausted and frequently unable to manage any after work social or domestic activities. My social, church and community activities are reduced by 50-75%. People (and spy cameras) only see me when I'm functioning.

Occasionally I have increased my work hours, and when I do, my symptoms are much worse and every other areas of life goes on the back burner. So I'm pretty confident this 12 or so hours per week is about as good as it gets. Now I could possibly get a few more, provided someone mows my lawns, does my shopping and I abandon a healthy lifestyle. I wonder if that is what the Government wants.

People with Disabilities are entitled to leisure and exercise as well as work. They are entitled to expend some of their limited capacity on self-care, which includes lifting groceries (even if you have a dodgy back). It includes walking the dog, going for a swim, doing the shopping – even if the exercise of those rights reduces the capacity available for paid employment. However these rights are currently under assault, even for the able-bodied – all in the name of productivity.

Even so, the reality of one hour of shopping is vastly different to 15 hours of work. While shopping you can sit and take a break. You can vary your posture. Just because you can do it for one hour doesn't mean you can do it for 15. If you put a litre of fuel in your car, you can drive quite happily for 10-20 km. The fact you can drive that distance in no way means you can drive 30km on one litre. You will stop and you will need to refuel. The problem for many people with disabilities is that they need to stop to refuel more often. They get less mileage per tank. It takes them longer to refill the tank. It is natural, logical and human to make the assumption that all is well because you can see the car driving – even if it wobbles a little. It is also dangerously WRONG.

Assessors and bureaucrats frequently make false assumptions about realistic work capacity and in doing so cause great harm to people with dynamic and invisible disabilities. Sadly what I have seen happen in my work as a mental health counsellor is that the Newstart Disabled develop depression, anxiety or PTSD due to their interactions with an abusive system. Then after several years of worsening disability they do qualify. The other thing I have seen is that if you take the pressure off people so they no longer have to “fight the system” - many of them begin to recover. They ask, “What now” - and in doing so, voluntarily choose a suitable level of re-engagement with the community, sometimes even paid employment.

A much better way would be to remove the perverse incentive to prove incapacity. Grant decent income support to all people who are not working provided they are taking reasonable action to improve their circumstances, within their realistically assessed capacity. Reasonable action may include study, engaging in treatment, community work, volunteering, writing a blog or job-seeking. However, if you want more people with disabilities to work, it will require a much more proactive approach than anything tried so far. The “free market” does not value people with disabilities because they are viewed as less efficient (i.e. it takes a bit of time, effort, creativity and sometimes money to fit them into your business model). I've talked about that here.

Now, just in case you have a disability and want to work I've included a few tips. But don't forget the standard advice – never lie in a job application:

How not to get a job with a Disability

• “Oh, by the way, my work capacity is 15 hours per week and I need to take a 15 minute break every hour. Is that a problem?”
• Tell the truth in an interview or application form that asks, “Do you have any medical conditions that MAY affect your ability to perform this job?”
• “Do you have somewhere quiet where I can lay down if I need to?”
• “Emotional dysregulation is part of my medical condition – I can usually manage it OK, but sometimes I need to take time out to avoid losing my cool. Is that a problem?”
• “No, I can't work Tuesday-Thursday. Is Monday, Wednesday, Friday OK?”

Here's to the dignity of work!