Tuesday, 9 February 2016

Ableism 101: Systemic Ableism

Following on from last week's post on general and individual ableism.  In this second post of the four part series, I'm giving a glimpse into institutional and systemic ableism.  That is, the ingrained ableism within our social structures that hold disabled people back from full participation in society on a ongoing basis.

There is no way I could cover all the ways in which systemic ableism is a thing, particularly because a lot of it is so ingrained that no one even questions it, but here is a basic list for you.


The picture above is a really obvious example of a really rubbish accessibility solution.  Often times organisations or businesses or governments (especially local governments to be honest) try to make places more accessible without doing their research leading to situations like this.  Buildings with no elevators or with steps in the door.  My own university has a very long building with several levels but only one elevator - at the opposite end of the building to where the mobility carparks are.  Mobility carparks that are placed on the other side of buildings to the entrance like one of my local supermarkets are also a great example of systemic ableism.  Systemic ableism is so common because the difficulties faced by disabled people aren't considered by people unless or until they experience it themselves, otherwise it's simply not a priority.  For me a common issue is poorly maintained footpaths, and at times even worse: ornately decorated footpaths.  Protip: cobblestones, bricks, etc. do not make for a smooth ride in a wheelchair!
Bumpy bump bump

Public transport is even more problematic to negotiate with disabilities.  Accessible toilets often have very heavy doors that are difficult for people in wheelchairs to push or pull while moving the wheelchair simultaneously, and I couldn't tell you how many times I've seen the mirror or the soap dish at a difficult if not impossible height for those using wheelchairs.  Reception desks are frequently too high and specially designed desks for those in wheelchairs go unattended or get used as storage spaces.  Shops are often too cramped for space and wheelchair users negotiate store interiors like obstacle courses.

But it goes beyond physical access too.  For those with hearing disabilities good subtitling is sporadic at best.  Of the three main streaming services available in New Zealand, Netflix is the only one that offers subtitles.  I might have been interested in Lightbox or Neon, but knowing that they don't offer subtitles and offered pithy excuses for it, I signed up for Netflix.  Services that offer phone call only for making enquiries or orders also demonstrate systemic ableism.  While NZ Relay is available via phone, I preferred their Internet relay service for making important phone calls to the likes of hospital specialists, Studylink, and so on.  However, now that java is somewhat risky for personal information and knowing that's what they use , I'm hesitant and have to rely on my flatmates to make important calls for me.

There's plenty more accessibility issues - I could honestly fill an entire post on it, but you get the picture!

Medical Ableism

I've talked previously of the issues of the medical model of disability.  Unfortunately there is still much of the medical community that holds to this negative view of disability that anything that isn't able-bodied is an affliction.  Obviously to an extent this is unproblematic - if certain (non-life threatening) impairments can be easily medically rectified and the individual (or in the case of the individual being an infant, their family) chooses this, there is no problem.  The problem is when the individual's agency is removed and the course of action to 'fix' the disability is chosen by others.  The medical model of disability beyond medical practice holds that the individual must adapt to situations and environments designed for able-bodied people, and this can cause adverse effects for disabled bodies, further isolating them from being able to fully participate in society.  For example, I cannot eat at a standard height table in a standard height chair without a great deal of pain and strain as my torso is shortened by the curvature of my spine.  This means I have to carry a thick cushion with me whenever I go to a restaurant or cafe.  Carrying more stuff everywhere can be annoying and burdensome and sometimes I'll forget the cushion and pay dearly with a very sore back and difficulty doing anything for the next few days, so I don't tend to go out to eat very often.  Sadly with the trend towards standardisation of just about everything, the medical model is alive and well in our social systems and institutions.

Underfunding and privatisation of healthcare including mental health services additionally adversely affect disabled people.  Mental illness affects a great deal of people but the correlation and coexistence of mental illness in people with physical disabilities often go overlooked.  The segregation of medical services means that a very piecemeal health plan is offered rather than a holistic approach covering all areas of a person's health and wellbeing.  Privatisation of health services additionally puts them out of the reach of poor people, of which disability is over-represented as I'll demonstrate soon.  Then there's the issues of where you might not look disabled or not be disabled enough to qualify for receiving the help you need.

Don't even get me started on health, life, and travel insurance.  Do you know how much extra finance, time, and energy disabled folk have to put in to insure themselves than able-bodied people?  I had plans to visit San Francisco a few years back.  These were thwarted when I discovered my insurance for travel in America was going to cost more than my air fares.  Fine then USA, your loss!

Academic Ableism

If you look up the #AcademicAbleism tag in Twitter, you'll see plenty of examples in higher education mostly to do with academic leaders refusing to accommodate the needs of their disabled students.  While I've been pretty lucky at my university to not have had many issues, I've heard some horror stories - including one friend of mine in the US who literally nearly died because her professor forced her to attend and complete her exam rather than go to the hospital (alarmingly she was a medical student and he a medicine professor!) or else fail her entire Masters degree.  She rushed to hospital just in time after her exam thankfully.  I experienced a pretty bad example of academic ableism prior to my current studies.  I was barred from completing a design course because I wasn't able to lift bolts of fabric myself.  I'd put $10,000 and 3 years of my life into that course and came out with nothing.

Segregation of disabled students into separate schools or classes at primary and secondary levels of schooling are another example of systemic ableism as it accentuates their difference, puts them behind educationally and socially and their ability to deal with wider society.  Compounding with that, the reduced interaction with able-bodied students mean that able-bodied students are less likely to understand how to relate or treat disabled students.

Employment and Poverty

Like the lecturers, tutors, and professors in the academic ableism tag, many employers don't want to go to effort to accommodate disabled people in their workplace.  Some PWDs are unable to work full time, and part time doesn't pay enough to make employment worthwhile.  The American Institutes for Research report a significant pay gap between able-bodied and disabled people.  A pay gap of 64c to the average dollar.  The gap only increases with higher qualifications. Add intersections of race and gender and those pay gaps, and things really don't go well for disabled Women of Colour!

So here we have a situation where disabled folk represent highly in unemployment and underemployment statistics, and those who are employed are often underpaid.  Let's add to this the mere cost of being disabled.  Doctor visits, transport to and from, parking fees at hospitals, or anywhere else they charge, costs to run a car if that's your only feasible mode of transport, cost of a mobility card, prescriptions, equipment, special dietary requirement, maintenance of equipment, etc. etc. etc.  It's easy to see why disabled people make up a significant portion of those living in poverty.


If I got paid to do all the paperwork I do as a disabled person, I'd be living a very comfortable life.  Forms for medical services, for equipment, for academic accommodations, for financial support, the list is very long.

If I got paid for all the waiting I do as a disabled person, I'd be a millionaire.  Waiting for doctors, specialists, prescriptions, surgeries, that's all par for the course.  Waiting for referrals to specialists, waiting for funding for medical equipment, and on and on... I've been waiting to see the pain clinic for coming up two years!

Media Representation 

Or rather: what representation?  Disabled people are few and far between in mainstream media, with really only a few token efforts here and there.  Even when token efforts are made, able-bodied people are often cast to act as disabled characters when there are plenty of capable disabled actors who struggle to find work.  Think Artie in Glee, Leonardo DiCaprio in What's Eating Gilbert Grape, Patrick Stewart in X-Men, Gary Sinese in Forrest Gump, seriously the list is ridiculously long.  The tropes on disabled characters are also a dime a plenty, many of which are straight up offensive.

It's no wonder then that if this is how disabled people are portrayed to the general public, that we become an afterthought in planning towns, buildings, etc. and treated as Other, lesser value humans.

These are just some of the ways in which systemic ableism is a thing.  It's invisible to most able-bodied people simply because it doesn't affect them.  I do not blame them for that, but more awareness would certainly make a lot of lives easier.  This is far from an exhaustive list, and it impacts our daily functioning.  Disabled folk literally can't escape it.  Have you experienced or seen any examples I haven't mentioned?  Comment below!

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  1. I agree with most of your points here, but for me this one has more than one angle:

    "Segregation of disabled students into separate schools or classes at primary and secondary levels of schooling are another example of systemic ableism as it accentuates their difference, puts them behind educationally and socially and their ability to deal with wider society."

    Not all disability-specific schools have a poorer education record than mainstream schools. My friend attended a school for the blind in the UK which had an excellent academic record. While the other points you raise are a strike against such schools, the schools are not necessarily entirely negative: in a life spent constantly struggling against an environment not designed for her abilities, my friend was grateful for a few years in which her environment was specifically designed to make what she was there to do, easier to achieve than it would have been in a school designed for the sighted.

    "Compounding with that, the reduced interaction with able-bodied students mean that able-bodied students are less likely to understand how to relate or treat disabled students."

    Yes, that's true. But is it the responsibility of disabled students to be living 101s for the able people around them?

    - See more at: http://www.theafflictionfiction.com/2016/02/ableism-101-systemic-ableism.html#sthash.IulRDTIv.dpuf

    1. You raise some really good points and I now realise I oversimplified the issue in a rather problematic way. Thanks for bringing that to attention and making me stop and think again :) I also agree that it's not our responsibility to be 'living 101s' as you put it (great metaphor!) but at the same time, given the warped perception that media give out on disability I think it's important that non-disabled people are more exposed (in one way or another - not necessarily schools) to disabled people to challenge the mainstream disability narratives. So yes I agree, a much more complex issue than I suggested.

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