On May 16, 2018, the City of Vancouver, BC voted unanimously to proceed with a ban on single-use plastic straws. They did so despite the fact they are necessary for some disabled people and that alternatives (metal, paper, bamboo…) are not suitable for different reasons for different disabled people.
The City had originally planned to ban other items, such as single-use plastic utensils but after concerns were raised during consultation, that was changed to opt in – meaning provided only if requested by the customer. In contrast, as a result of consultation the opt-in for plastic straws was changed to a ban in part because “staff concluded that a customer prompt or by-request by-law was not practical…”
Months earlier the City’s Park Board had voted 5-2 against banning balloons after clowns protested.
Disabled people who shared their concerns, frustrations and criticisms of the straw ban on Twitter, many attempting to patiently explain why they are a necessity for some, have received hostility from many and support from few. The ‘just curious’ want to know why the alternatives aren’t good enough for disabled people and despite the abundance of articles, handy info graphics and tweets addressing that, seem incapable of finding the information out for themselves. Or perhaps it’s because those aren’t detailed enough and don’t explain exactly what is ‘wrong’ with the disabled person that prevents them from drinking without a straw.
The ban (approved in principle) comes into effect on June 2019. Vancouver is the first Canadian city to ban straws but it is a trend that is happening all over the world.
If you write policy as if disabled people do not exist and as if discrimination against disabled people does not exist, then you almost certainly write discrimination into your policy.
The City has since said they will further consult with the “unintended consequences” including hospitals and health organizations, bubble tea shops and disabled people.
“I’m just curious…”
Non-disabled people have questions and it is my job to answer them. This unasked for, unpaid position is one I was given when I became disabled. One moment they are curious about why some disabled people need straws, the next it will be something else.
For some it’s the kind of idle curiosity they have about a lot of other aspects of our lives.
‘Can you still have sex?’
‘How do you have sex?’
Peeking in, not wishing to do anything useful with the information they gather. It’s what my mom would have called a nosy neighbour, not a helpful neighbour. Curiosity is their itch and they expect disabled people to scratch it.
For others it’s the kind of curiosity people have as they compile their case against you. This is discovery – ‘hand over your evidence and let me interview your claimants looking for weaknesses and inconsistencies I can exploit.’ They argue for sport, not pursuit of knowledge.
I don’t like indulging either of these kinds of curiosities. I will, however, sit for months; years even, with someone who wants to work together on accessibility and are willing to commit to mutual respect, time, transparency, responsibility and accountability.
If you spend time on social media, you may have noticed disabled people who don’t use straws understand why some disabled people do – without knowing the specific reasons.
Though the specifics of our situations differ in important ways and are affected by components of our identities beyond disability, the experience of being disabled in a society that excludes, devalues, demeans, objectifies, dehumanizes, degrades and pities disabled people, is something we all have some familiarity with. Our struggle against it is what unites us, not our particular medical diagnosis or accessibility needs.
Despite my reluctance to entertain the curious I have decided to talk about something that I suspect will be uncomfortable for many to read. My choice of topics is deliberate. Think of it as boomerang.
The following is in no way comprehensive so if you read it please don’t say ‘now I understand’ because you don’t. Despite its length, it’s a tweet of a snapshot of a moment.
If you’re going to skim this, stop now and don’t bother continuing.
This is my story and I am telling it my way.
This is about the straw ban but it isn’t about straws.
I used to wear disposable adult diapers. I didn’t need them for the reasons most people use them. I wasn’t incontinent in the usual sense. My bladder didn’t leak when I coughed or laughed. I could easily hold a very full bladder the way I always had. But whether my bladder was full or nearly empty when I went through the motions necessary to undress and transfer from wheelchair to toilet, I would pee – before reaching the toilet. It wasn’t a leak, it was more like if you took a bowl full of liquid and flipped it over.
This started happening out of the blue. I’d had a Foley catheter (or rather, catheters – plural – because they have to be replaced regularly) for over a year but I’d also been without one for over a year by then. They are made of things like latex or silicon and vinyl – and every insertion kit is a bag of garbage all on its own. The collection bags can be washed and reused a few times but they eventually end up as garbage as well. The washing and reusing of collection bags was what occupied a lot of my home care time –so much so that there often wasn’t time to wash me.
I did not medically require a catheter at the time I had one. It was inserted initially for the convenience of nurses at the hospital and later maintained because of the way we organize and fund ‘home care.’
I was never given a leg bag so when I went out I put it in a cloth gift bag. I had bought a bunch of those from a woman at a local craft fair in effort to reduce my use of gift wrap.
When a friend of mine came across a website for handheld urinals for people without penises it was a game changer. While the other blue plastic urinals are stacked ceiling high in hospitals, not only did I have to bring my own with me none of the healthcare professionals had ever seen one before.
The allotment of funding and thus time for home care is limited so their hours were spread out. Different people popped in and out from morning to night meaning most of the time I was alone and so I kept a jug beside me to empty the urinal into. My wheelchair wouldn’t fit in the bathroom or kitchen or bedroom of the rather large apartment I was living in back then. It also had to be stripped of footrests and headrest to fit on the elevator.
During a prolonged hospitalization I successfully advocated for physiotherapy that doctors had previously insisted would be pointless. As a result of that and the elimination of a medication that was causing additional weakness, some strength returned and I also learned to use the muscles unaffected by my disease differently. I started transferring to a toilet.
That went without a single leak or explosion of urine except twice at the hospital just before discharge. The nurses and doctor dismissed it as ‘well you’re disabled’ which, loosely translated means ‘I can’t be bothered; you’re already broken/deformed/not normal and we can’t fix you (make you non-disabled) so it doesn’t really matter.’
If someone puts a scratch on a broken lamp, who cares?
I cared. What if it was happening because there was a tumor that we need to pay attention to because it could kill me?
During the years I wore diapers I had to be careful not to allow my bladder to get too full. The safest method was to pee before I felt the need to. I developed a system for this pretty quickly.
Still there were frequent messes.
There were a few instances where I ran out of money and diapers. Towels are not nearly as effective as those plastic-covered, chock-full-of-chemicals-that-make-them- absorbent disposable diapers.
Once someone from the pastoral care team with one of the hospitals brought me a package. Unfortunately, she estimated I would only need two to three a day. On another day, a pharmacy took pity on me and had a package delivered to my door free of charge. Eventually the Ministry agreed to cover the cost but that meant ordering through their supply warehouse and storing boxes of diapers in my already cramped ‘unit.’ I am grateful they were covered but the boxes literally became a wall in the middle of my already poorly designed for human – especially wheelchair using human – habitation unit. I also dreaded the interaction with the delivery person and the thought of how many people that dolly full of boxes passed as it traversed the lobby and rode up the elevator, down the hall to my door.
I would cut up the boxes as they emptied and take them outside to the cardboard recycling bin. It would often take a few attempts to get the pieces into the thin slot at the top of the front of the bin designed to force people (who are standing) not to throw unbroken-down boxes in.
I’d peel off the labels first as if destroying the evidence that they were mine.
It didn’t matter.
Someone(s) was curious.
“I’m just curious why someone so young wears diapers. Is it part of whatever is wrong with you? What is wrong with you? Have you always been this way? Can they cure it?”
Others preferred passive-aggressive attempts at shaming.
“So you wear diapers?” is apparently a thing some people feel is appropriate to walk up and ask someone who doesn’t even know your name.
I regret my own shame in this situation. It would have changed a lot if I could have let it go sooner but every time I would start to feel less ashamed someone was waiting in the wings reminding me I was awful, my needs were disgusting and burdensome and wasteful.
There are infinite ways to say ‘you aren’t really human.’ You don’t even need to use words.
One day one of the elevating leg/footrests on my wheelchair cracked in half. (It was on the side where I transferred and thus more likely to get dripped on.) They are made of metal but there was a spot where one piece connected with another and I assume, despite my best attempts to scrub and dry whatever got hit, droplets of urine got trapped in where the metal pieces overlapped and over time ate through it.
The government dictates which stores you have to deal with when you get equipment funded by them. I don’t know if they purposely pick the worst but they find them.
I have had relatively good experience with another that I went to privately. They applied and were not awarded a government contract.
I have genuine questions about how those R.F.P.s were decided. I have evidence of public funds purchasing one thing and receiving a different thing of much less value and that was unsuitable for my needs.
Every interaction with them was degrading and humiliating and in one instance began a series of events that would cause irreparable physical harm to my body. You don’t open the door to people who hate and harm you and welcome them into your home and yet that is what I had to do every time my wheelchair broke down. To put my feelings about these businesses and the people who worked in them in context, I volunteer my time to helping to improve healthcare professionals attitudes and treatment of disabled people. I remind myself regularly that I have met many extraordinary healthcare professionals and that the horrendous ones occupy a disproportionate amount of space in my brain not because of their quantity but because of how horrendous they were. I try to keep bad in perspective.
I have not one good thing to say about these people or these businesses and see no cause for believing they would improve., nor do I desire an apology. Hate doesn’t need sensitivity training or awareness exercises – it needs to be shut down – and failing that at least starved of public funding
‘Why not complain to the government?’ I can hear the earnest ask, as if it were something I had not already done.
Even before the leg/footrest broke the store had contacted the Ministry and the gist of it was informing the government they no longer wished to honour the service contract they had been paid for because if the wheelchair (joystick, motor) was breaking down I must be doing something wrong. The government, rather than investigate if there was any basis for these accusations or even contact me demanding I respond to them, instead just sent a letter threatening to stop repairing my wheelchair. Their threat terrified me. Without my wheelchair I would die – literally.
I went to my MLA Spencer Chandra-Herbert who as always was supportive..
On the outside my fists go up but on the inside I am frightened, shaking and sobbing.
So when the leg-rest broke I went without one rather than call for service. I still had one leg/footrest so I would put both legs on it to keep them elevated but the interloper leg would constantly fall off. Months later I found some footrests on an old wheelchair that fit mine. They weren’t elevating but they were better than nothing.
Keeping to a pee schedule at home is easy enough but if I went out it was a stressful gamble.
The diapers themselves are quite absorbent but speed, angle, shift in position, multiple things can result in some leakage.
I always carried another set of clothes that looked similar enough to the ones I was wearing so hopefully if I did have to change it would be less noticeable.
Wheelchair washrooms are a never-ending game of Where’s Waldo. Also, accessible washrooms often aren’t accessible.
I tried never to use the shared washrooms because of the open space between the wall of the stall and the floor. This was in case any leaked onto the floor – which didn’t usually happen but happened enough to make me anxious about dealing with people’s reactions. Plus, there was no place to throw out the used diaper in the stall so it meant carrying the telltale plastic bag out to the trash bin.
I remember one woman who walked over to throw out her used paper towel. She spotted my tied plastic bag in the garbage and very purposefully took a step back, extended her arm out and up and dropped the paper in, as if she’d seen a dead rat in the container.
But using a single use washroom was also a problem because almost without fail people would start banging and sometimes kicking on the door yelling at me to hurry up and informing me that I was taking too long. They were all quite certain they knew and had a right to decide how long I needed to be in the washroom.
In addition to extra clothes I carried disinfectant – bottle or wipes (for floors, seats and anything else that might get wet), paper towels, plastic bags, disposable wipes, hand sanitizer, cloth washcloths, rags and of course diapers. All purchased from my extremely limited funds on disability benefits.
I tried not to drink very much when I went out but that was also a problem because not drinking regularly caused urinary tract infections, which in my case meant going from clear yellow to cloudy and bloody, coupled with pain and fever in a matter of hours. Many times, it would take a quick jaunt over to the kidneys and once I became septic.
I was already taking full dose antibiotics every day ongoing so if an infection happened it usually meant hospitalization and IV antibiotics. IV tubes and bags equal more plastic and waste.
I should probably mention I also had an ongoing open wound in my leg at the time. It was relatively smallish – a few inches long, a sliver to several inches wide depending on the time of day and the amount of swelling in my leg. Each night it would do what wounds do – dry up and start to form a scab. But in the morning when I put my legs down to move around they would swell and the scab would burst open and the fault line in my leg would spread.
Bandages of the size and type I required were not cheap. Each one only lasted a few hours before it was soaked through, so I started to use menstrual pads held in place by socks and when that too proved too expensive I started cutting them in half. I saved the bandages for when I went out. Still the exudate would sometimes seep through and a little yellowish dot of serous would be visible through the outside of the dressing if my sock slipped down and I waited too long to change the bandages or under-estimated how long I was going to be out. The wound was on the inside of my leg just above my ankle. I wore jeans and always had socks or compression stockings on. I self-consciously worked to keep it hidden. You had to go out of your way to look at it but somehow none of that stopped some people from telling me it was infected (it wasn’t), disgusting (I think their behaviour was) and that I should be in a nursing home or hospital not a park ‘where there are people around.’
One day a friend who I’d known before becoming disabled came for a visit. We were good friends but she lived outside Vancouver, traveled a lot domestically and internationally and when we got together we usually met up somewhere since we couldn’t travel there together.
We’ve always been very different people living very different lives but since I became disabled and poor our lives are radically different.
Among her deepest passions is the environment. She keeps bees, has compost inside and out, shops local, organic (whatever she doesn’t grow herself) and not only brings her own bags but her own containers. She helped set up various ‘green’ programs in the community and single-use anything was eradicated from her life years ago.
She was an early and zealous adopter of zero waste. Even when no one outside of the green community was even thinking about single-use plastic bags, she felt free to tell me exactly what she thought about my use of them and showed up with a stack of reusable ones and said – HERE!
And now here she was standing in my doorway and I realized I hadn’t had a chance to take my garbage out to the bin and that meant there was a garbage bag with other garbage bags (diapers, bandages, vomit…) inside it. I had also forgotten to hide my big bag of grocery store bags – though I never used them for shopping I did use them to offset the cost of buying kitchen bags.
I felt a knot in my gut as I struggled with whether to shove her out the door or have a battle that could end our friendship.
Internally I might have still been struggling with my shame but outside I was not about to justify myself to anyone – even her.
It was a moment.
I opened the door, backed up my wheelchair and motioned to the bags – might as well get it over with. Racing through my mind was how to tone the “Just don’t even! Don’t you dare lecture me about the future of the planet while ignoring my present. You who’ve flown on how many airplanes to how many countries this year alone? You who drives to Whistler and Washington to ski and Alberta to hike?” Fortunately, none of that came out because she spoke before I could.
She waved her hand like she was swatting a fly. “It’s not as simple as everyone makes it sound. It’s not cut and dry. Life is complicated. I’ve learned from you. You don’t need to justify your needs to anyone. I never thought I’d have to say that to you of all people but I know why I do. I see what happens when we go out.”
We are still friends. This is how it works.
She: Does this work for you?
One of the few people on the face of the earth I’d be inclined to provide with a detailed explanation on why something isn’t accessible or suitable – never asks for any explanation. She understands that her experience with the world is now profoundly different from mine and she has no basis for prescribing or deciding, let alone demanding, dictating or prohibiting, what I need.
And when she asks if something works for me it’s not idle curiosity. It’s because she’s trying to rig a system so I can open my windows that are too high to reach in my theoretically wheelchair-adapted unit.
She’s never known much about my health issues. If we talk about anything health related it’s more likely to be about the harmful attitudes, practices and beliefs of healthcare professionals and medicine. We’ve been friends for nearly two decades and she could probably only name two of my conditions. She could list a lot more of the barriers I face. She understands my choices, needs and life are much more than ‘a health problem’.
She respects I get to pick what parts of my life I want to discuss just like she does.
She understands the same person who uses a megaphone to share her opinion on a policy may value her privacy.
My body’s balancing act is something I adjust to quite well and I take considerable pride in my ability to figure out how to meet its changing needs effectively. I research, I test out hypothesis, and if one experiment fails I move on to another. Other balancing acts are sources of exhaustion not satisfaction. Balancing dealing with people who don’t have a single clue about you or your life and are demanding you summarize in 280 characters why you need something different than they do with my desire to create change and not be bitter. Balancing lack of accessibility with my desire to be outside and active. Balancing poverty with the costs of even looking like you could apply for a job that doesn’t exist because of barriers much more complicated than just ramps and doorways with not just giving up and sitting inside waiting to die in this utterly unaffordable city. Balancing proximity to healthcare with accessible/actually affordable housing. Balancing accessible/actually affordable housing with proximity to post-secondary institution and my desire to return to my studies…and balancing my concern for the future of the environment with a desire to be alive and have a life on this planet in the present.
At first, I tied each diaper in a bag and twice a day took out a bag of bags. Then I found an old container with a tightly fitting lid in the garbage room. I cleaned it up and made it into a diaper pail. This reduced the number of plastic bags but it didn’t eliminate them.
Several invasive examinations with urologists later the urine explosions stopped as abruptly as they began. No one is certain why it started or ended. What if I had to justify my use of plastic bags and disposable diapers to politicians and public? Would I bring my diaper pail to a public hearing? Would I need to make a video to demonstrate what happened when I transferred? Perhaps I’d have to pay my urologist to come testify about his working theory before council? Would there be a scale used to determine how many bags I am allowed before it’s too many to justify my continued existence? Maybe non-disabled people on Twitter could have advised me? I am confident they would have had ‘ideas.’
What they wouldn’t have had is a clue.
In case it’s not clear, solving the problem of my errant urine was minimal compared to dealing with a world designed not to include me – and which considers any tiny gesture to do so a special treat.
Oh yeah, I also used plastic straws back then too and no I won’t explain why.
What I will tell you is that I was trying to have and build a life simultaneously. I was shopping, visiting, writing, and volunteering in spite of everything being designed for me not to and in spite of people’s ‘curiosity’ – not in spite of my disability.
Being a disabled person is much more than being a person with a disability. Even if you read my medical file you won’t understand what it is to live as a disabled person. The government of a city, province, state, country or union that has not eliminated the oppression of disabled people, that has not banned the denial of services and support we need and demolished or renovated structures that are not accessible to us, has no right to an explanation from us about why we need straws.
The answer is we need straws to live. The rest is none of your bloody business.
Sidebar – at the bottom.
After rent, phone and other bills, at the time (the rates have since been marginally increased) I was left with around $400/month.
Here are some of the non-food costs:
All these items were used more than average single non-disabled person would.
Laxatives – this alone would often be more than $100/month
Laundry detergent (more than typical single person)
Wipes – for body
Wipes – for cleaning
And now – straws. How much will they be when they become a ‘medical supply’ product.