What if your luxury is my accessibility? What if the things you deem extras are essentials to me?
I am a disabled woman. To be more specific, I am both visibly (I am a non-ambulatory wheelchair user) and invisibly disabled (multiple disabilities which are not apparent by looking at me).
People routinely argue with, ignore and deny my accessibility needs for my visible and invisible disabilities. More importantly so do the politicians we elect, the governments they form and the experts they consult with and who I am forced to deal with because they are given gate-keeping and decision-making power over my life.
All of them keep several bingo cards worth of excuses on hand for why my or any other disabled person’s accessibility need(s) can’t be met.
The needs vary but the excuses rarely do.
I am also poor. This is not uncommon for disabled people, especially disabled women and especially for those who live alone or are single parents.
When you are poor even basic needs such as shelter, food, essential clothing and grooming are treated more like luxuries than they are rights. Even though public programs and financial assistance are not supposed to be framed as charity the legacy remains in the form of the ever-present ‘taxpayer’ rhetoric and the various policing of how poor people spend what little money they have. As a result there is an expectation of excessive and overt displays of gratitude and at minimum a submissive acceptance of making do with unsuitable even if unsuitable means unusable and/or significantly lowers the quality and/or quantity of your life in ways that it would not impact a non-disabled person of similar income.
As well there is something we disabled folks refer to as #CripTax. The additional costs associated with living as a disabled person. Many or most of these are a direct result of ableism in that they are either not covered, more expensive or required because the ‘regular’ version or method is not accessible to us.
I’d like to talk about the ones that deemed ‘luxuries.’
First it’s necessary to mention how limited and limiting the current understanding of accessibility is. It’s not intersectional. It’s not evidence or science-based. It caters to and reinforces a disability hierarchy and there is enormous gate-keeping regarding which disabled people and what kind of things fall under the category of accessibility. It fails to acknowledge inaccessibility as result of and source of discrimination and violation of our rights. At best it seems to aspire to plausible rather than pleasant, easy, enjoyable and aesthetically pleasing or at least not unpleasant which are things typically expected for the systems, policies, places, spaces and things for non-disabled accessibility.
Second, even though many things needed for wheelchair accessibility are also frequently deemed too much of a luxury (auto-door openers on public washrooms for example), I am going to focus more on some that are related to the invisible aspects of my disability.
I have an auto-immune disease that causes, among many other things, fatigue.
Fatigue is not like being tired. In fact it’s really nothing at all like being tired. Having previously been someone who often worked too long and too hard and slept too little, I can confidently tell you I have been extremely tired emotionally and physically and it is nothing at all like fatigue.
As a result one of the things Occupational Therapists taught me was to do things to try to minimize the amount of energy required for a task; energy conservation. This is important for me for managing pain, energy and other symptoms. Another version or framing of this is the well known spoon theory.
So what are some of my ‘luxury’ accessibility needs?
A washer and dryer inside the unit. The idea of putting washers and dryers inside apartments is seen as a luxury reserved for condo owners and people living in expensive rentals. Aside from concerns about spreading infestations and the (should be obvious) challenge of carrying dirty laundry down the hall, into the elevator, down another hall, opening door of and getting into a laundry room in a manual wheelchair – and doing reverse with clean laundry (or still dirty laundry if washers are in use as is often the case in my building which has one accessible laundry room with two washrooms for over 200 apartments), there is the issue of energy conservation. And then there is the issue of incontinence and regurgitated contents of my stomach and the fact the longer those sit unlaundered the less likely it is they will get clean, will attract bugs and will cause odours within the home. On top of that there are the odours of other people’s heavily scented laundry products, the laundry of heavy smokers that in addition to the smell coming from them and their laundry, is often filled with ashes and an assortment of other things that my body and health do not appreciate.
A dishwasher. This would cause less pain if counters were on hydraulics and taps and faucet weren’t placed at the back but washing dishes actually involves a number of movements that are difficult for me. It’s a frustrating reality that at a time in my life when I could particularly benefit from cooking more and eating prepared less, I am doing more of the latter and less of the former than I have ever done in my life.
Countertops and cupboards on hydraulics.
A computer. Isolation is on par with smoking 15 cigarettes a day in terms of impact on your health. I remember how incredibly isolated I was before I had a computer.
A second wheelchair. Wheelchairs break down.
A SmartDrive or cycle add-on for wheelchair. I live in a city that prides itself on its bike lanes, emphasis on active transportation, brags about its two-wheeled bike share and where every street is varying degrees of steep.
Is not this
Because people have to have clean clothes and need to be able to get to medical appointments and do have to eat these needs still have to be met.
In my building we have a lounge where all the care aids gather and do laundry for people who mostly could do it on their own if they had units in their own apartments. I am hard pressed to find an explanation that doesn’t involve ‘because it’s a luxury and poor people don’t deserve luxuries’ as to why it is better to pay for care aids to do laundry indefinitely than it is to put a washer and dryer inside an apartment.
Likewise I know many of my taxi and HandyDart trips would be eliminated by policies supporting active transportation for disabled people including ‘luxury’ mobility equipment and charging stations throughout the city for those who use scooters and power wheelchairs.
People can eat better and maybe have the energy to do other things with their life like volunteer and work if they have the equipment that makes it reasonable to cook and do dishes and not the non-disabled equivalent of pumping water from a well and hauling it inside to do dishes.
If you are a disabled person what are some things you need for accessibility that people dismiss as luxury?
These are just a few of mine that come to mind.