Disability Assessments Are Not Grounded In Reality

I shocked my doctor when I showed up at her office using a wheelchair — because according to Ontario government standards, I don’t have a mobility impairment. [Image description: selfie of a fat, white, femme-presenting person with short blonde hair, wearing black Ray-Ban Wayfarer sunglasses, bright pink lipstick and a blue and white dress short-sleeve dress with black polka dots, sitting in a wheelchair.]

Let’s talk a little bit about how mobility impairments are assessed.

By and large, the benchmark for whether a person’s mobility is ‘markedly restricted’ is their ability to walk 100 metres. This is the standard used for the Canadian Disability Tax Credit, for the Ontario Disability Support Programme, & for mobility-related benefits in the UK. (In fact, for higher-level benefits, the UK has recently reduced that value to 20 metres.)

It is also a standard which does not remotely reflect the realities of living with a mobility impairment, & which is capable of assessing someone like me, who is functionally housebound — as unrestricted in terms of mobility. Let’s examine how that happens, exactly.

First, this standard does not accommodate for functional variability. It does not accommodate for the fact that someone with chronic pain may be able to walk 100 metres one day, and completely immobilised by pain the next. It does not take into account that someone with narcolepsy may be able to walk 100 metres — or they may experience a cataplexy episode 15 metres in and collapse, unable to move, whilst in the middle of crossing the street. It does not accommodate the fact that someone with a brain fog, or a sleep disorder, or a seizure disorder or a mental illness may physically be able to walk 100 metres, but that doing so is dangerous because they may experience an altered state of consciousness in the process.

The next major problem is that being able to walk 100 metres in no way reflects the actual mobility requirements of existing in the world. For instance: the distance from my home to my doctor’s office is 1200 metres. There are no benches or other spaces to sit along the way. The distance from my home to the nearest grocery store is 1400 metres. There are no benches or other spaces to sit along the way. The distance from my house to the nearest bus stop is 400 metres. The bus comes every 2.5 hours. There is no seating at the stop. There are of course no benches along the way.

When I lived in Cardiff, the distance from my flat to the nearest bus stop was 350 metres. There were no benches along the way. The distance from my flat in Cardiff to the nearest grocery store was 950 metres. You guessed it: no benches along the way. This pattern is by no means exclusive to small towns and small cities.

The distance from the nearest subway station to the university building where I work is 400 metres. D’you think there are benches along the way? You can, maybe, sit and rest at the Tim Hortons near the station, and the coffee shop catty-corner to the university but that assumes there are free tables at these busy, downtown coffee shops, and of course, you’ll be expected to buy something. (#DisabilityTax yo.) And you’ll still have to walk 280 metres to get from one coffee shop to the next.

When I was visiting London last year, I experienced a severe sleep attack while at a small museum with, you guessed it, no seating. I had to walk 350 metres to the nearest Caffe Nero, where I was lucky to get one of the last available seats. No benches along the way. Of course.

We build inaccessible cities, with hostile architecture and a lack of seating — and then set mobility standards that in no way reflect the realities of living in those cities.

The third major problem with the 100 metre standard — and other, similar standards for physical functionality is the way in which they are assessed. The question of ‘ability’ is almost always an absolute one. Assessors are not interested in whether it causes substantial pain to do the task in question. It’s irrelevant to them whether accomplishing the task in question will impair your ability to do other things afterward. There is no room to consider that “walking 100 metres” will hardly be the only thing — or even the only walking — you have to do in any given day.

For example, when my GP asked, for the purposes of ODSP assessment, whether I can stand, and whether I can climb a flight of stairs I noted that standing for more than a few minutes causes me severe knee and back pain, and that climbing a flight of stairs leaves me lightheaded, out of breath, and with my heart racing to 180 bpm. She said that per the assessment, those still qualify as “Yes’s”.

In some jurisdictions, the wording of these assessments has been amended to “can walk 100 metres without severe risk to health”. Except that does nothing to ameliorate the problems with the absoluteness of these standards — if anything, it makes them worse. Very few people will experience “severe” health risks from walking 100 metres — because of course pain & fatigue are still not accepted by the medical establishment or by the government as severe health problems. If anything, older wording based on ability rather than risk left at least some room for compassionate assessors (snort) to identify impairment in instances of invisible disability.

The moral of this story, I guess, is that accessing disability benefits and accommodations is much more difficult than any person without direct exposure to the process can possibly realise, and that means-testing is always constructed in such a way as to minimise expenditure rather than to accurately reflect the conditions in which a claimant lives.

Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard