Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.
Earlier this week, a stub of paper was slipped under my office door — it read “Your wheelchair is RAD”. I snickered, thought it was cute, and felt that whoever decided to share this with me (presumably a student) really “got” me and my sense of humour.
But this little slip of paper has some increased significance given the proximity its receipt has to today: International Day for People with Disabilities.
I don’t typically celebrate this day. It doesn’t feel like a holiday and it’s at least a bit disheartening that the largest minority in the world rarely even gets their day mentioned on the news, let alone receives any sort of pop culture acknowledgement.
Perhaps this day shouldn’t be just about “raising disability awareness” among those poor souls who haven’t joined our ranks yet. Maybe this should be about celebrating us, “the community,” and all the amazing, staggering and radical things we have done over the past year to push back against the ableism that lurks outside the comfortable confines of our accessible home spaces and work places.
Today, let’s not celebrate the rad chairs. Or the rad walkers or rad crutches. No need to fete rad prosthesis or rad hearing aids or any of the other rad devices Yes, they can be cool and yes they are liberating, but these are all just tools. They’re devices that some people use and others don’t feel they need.
We, the users, are the ones that make them radical.
We make them radical in the ways we use them to oppose a society that says we do not belong. We MAKE them rad because our very existence is a radical act of opposition against normative and eugenic ideologies that have long attempted to eliminate us. Adaptive devices are tools of resistance, yes, but we the users are the true radicals.
So I dedicate today to everyone who radicalizes their tools and uses their devices to confront the disabling aspects of our world. I dedicate today to those who demand a world where using a device doesn’t have to be a radical act. I dedicate today to the radicals that we lost in 2017 and to those who will continue to be radical into 2018.
And last but certainly not least, I dedicate today to all of those who taught me, trained me and inspired me to be a little radical too.
Just in time for the weekend, new changes were announced to the Ontario Disability Support Program (ODSP) that would eliminate some of the more punitive restrictions that, in my opinion, contributed to people getting stuck on the program. The biggest change comes in people’s ability to save money and assets while receiving ODSP support; whereas previously users could only save up to $5,000 before losing their monthly benefit, now individual users can save up to $40,000 in cash and/or assets without affecting their monthly stipend or medical benefits. Credit where credit is due — this is a really important change to ODSP. By allowing people to save/hold more assets, we’re enabling people to have a better standard of living. Not only that, this increases the chances of young people with disabilities being able to attend post secondary school, as most would need to save a lot more than $5,000 per year to afford the cost of university/college.
But much like the Registered Disability Savings Plan (RDSP), my main concern is that the benefits of these changes will not be felt by most on ODSP, disproportionately helping the small percentage of users that already benefit from familial, financial and social privilege. These changes (and RDSPs more generally) are great for people who have pre-existing access to money through family/friends, a group of people I suspect are already well positioned to manage. But just like how those scrapping by exclusively on the monthly stipend from ODSP do not have enough money to regularly make deposits into an RDSP account, these changes will not be greatly felt when a vast majority of one’s “earnings” are going to cover day-to-day expenses with very little left over to save. To put this into perspective, ODSP recipients are only entitled to a maximum of $1,050 per month; with most one bedroom apartments renting for over $700 in London, that only leaves $300 to cover transit, food, clothes and other needs.
As Ron Malis, a financial advisor for people with disabilities, aptly states in the article:
“You increase the size of the water barrel, but you do not allow people to open the tap much more than is currently possible today,” Malis said. “It makes things so complex for people who are struggling.”
Without significant increases in housing & spending allowance, I fear these changes are more of a PR stunt and many on ODSP will not see any tangible improvement in their quality of life.
So credit where credit is due, but there is still much to be done.
When it comes to development, I fully agree that we need to strike a balance between functional use and environmental protection. At the same time, a recent decision by city council in London to prioritize existing trees over accessibility needs is an interesting study in ableism and the privilege of the normate and their aesthetic preferences. Similar to the bylaw that restricted group home location, by not installing sidewalks we are yet again unintentionally disabling a vulnerable segment of our population, legislatively engineering barriers that make it harder for those with mobility challenges to live in certain (established) communities. Whether they meant it or not, this keeps the disabled out of certain areas in our city. Continue reading “Sidewalks, Trees and Legislating Barriers”
City Council in London is moving toward eliminating a problematic piece of legislation that attempts to limit the density of group homes designated for disabled people within specific neighbourhoods. The intent of this separation distance bylaw may not be as nefarious as it appears at first glance. It’s my understanding that the objective was to ensure that people with disabilities were not ghettoized into one or two specific locations in the city. The intent, then, was allegedly to better integrate disabled people into communities city wide. Whether that intent was achieved remains to be seen. Continue reading “Discriminatory Bylaws and Biopower”
From a young age, we are taught that the road is a dangerous place, whether you’re walking, biking or driving. We’re taught to always be vigilant, to use the sidewalks when possible and to only cross the road when it’s safe to do so. But the road can be exponentially more dangerous for wheelchair users, who tend to sit below the sight lines of drivers, often operate at atypical speeds, and at times have difficulty accessing the relative safety of the sidewalk and are forced to use the road instead. Of course, drivers should always be aware and share the road with other modes of conveyance (#BikeRights!!!), but that doesn’t always work out.
Typically, there’s not just one cause of a collision, but rather a confluence of danger factors that result in an accident. While I’m not privy to the details of the specific example in London, and cannot say for certain that any of these issues played a role in what happened, there is perhaps more to this story than at first blush, because there are two municipal and provincial legislative directives that contribute to the risk of roadway use by wheelchair users.
Making wheelchairs safer: A local solution…
To put it bluntly, it’s extremely difficult to navigate the city in the winter as a wheelchair user. At times, our sidewalks are covered with so much snow they are rendered unpassable, but this is a reality in most Canadian cities. The bigger issue, though, is not the sidewalks themselves but when snow plows pass by and fill the curb cut in with a wall of snow, leaving the sidewalk (and bus stops) inaccessible. Similarly, a lack of snow removal at bus stops make an already problematic transit system even less functional for wheelchair users, as snow drifts can make it impossible to drop the ramp.
This issue is, in part, a product of our bylaws. Currently, the city dispatches snow plows to the roads after 5cm of snow has fallen. However, the city does not dispatch sidewalk cleaning services until 8cm of snow has fallen, meaning if 7cm of snow falls they will clear the road but not send out a crew to clear the access to the curb cuts rendered inaccessible by the plowing. This may sound like a small gap, but it is not uncommon for sidewalk access to be blocked for days at a time in the winter. What’s more, bus stops can take up to 72 hours to clear in snowmageddon situations – stops that continue to be accessible to non-wheelchair users who can (albeit awkwardly) step over the drift.
The result? Wheelchair users who cannot afford cabs or cannot get a ride on Paratransit (which is most of us…) are left to do it ourselves by driving on the clearest path available, which is the road. The more wheelchairs we have driving on the road, the more likely someone is to get hit as we sit below typical driver sight lines and are moving much slower than the standard flow of traffic.
Simple solution #1 — ensure sidewalk entrances are cleared whenever the plows are dispatched, not just when sidewalks themselves are being cleared.
Making wheelchairs safer: A provincial solution…
One of the cited justifications for the accidental collision in London was that the wheelchair itself did not have any reflective tape and, therefore, the all-black wheelchair was difficult to see in the dark. While this is true, what is not explained is that this lack of visibility could be as a result of wheelchair funding programs in Ontario.
The first program, the Assistive Devices Program (ADP), currently does not fund lighting packages for electric or manual wheelchairs because they’re deemed a “luxury” and not a necessary safety feature. To be fair, these lighting kits can be quite expensive (the set for my wheelchair was quoted at $1,000 for front and rear LED lights) and that requires a conversation about the medical industrial complex and the ways “medical devices” are up-priced to gouge insurance and government systems.
At the same time, most aftermarket lighting options are independent of the wheelchair itself, such as the blinking red lights you can buy for bicycles, which can mean they are difficult to mount in a spot where the user can access it to turn it off and on and they rely on an additional power source to power them. The standard lighting package that could have come with my chair runs off the wheelchair’s existing power source and is accessed through the existing joystick, ensuring that users can access it when needed regardless of strength or flexibility. Because these kits are so expensive and they are not covered by ADP, most users forgo their addition and, as a result, are driving around without any lighting after dark.
The second program, the Central Equipment Pool (CEP) which is a subset of ADP, has a rule mandating that all electric wheelchairs purchased through this program must be black, regardless of whether or not alternate colour options are available without increasing the overall cost of the chair. For example, my current chair, a Permobil F3, comes six different bright colours but instead of being able to get a chair that reflects my personality and taste, I was required to get the solid black model. It’s been explained to me that the principle behind this decision is that all CEP chairs are intended to be returned to the government when a user is “done” with it so it can be recycled and they don’t want an issue arising where a user receives a hot pink wheelchair they may not want to use.
The problem is that this presumes two things about the CEP which might not actually be true in terms of wheelchairs. First, it presumes that CEP is actually recycling wheelchairs, which in my limited personal experience it is not, as I have never received a “used” wheelchair in my ~15 years on the program. Second, it presumes that wheelchairs are being returned to the program in a condition such that they could be sent out for someone else to use – my last chair went back to CEP without functional motors, batteries, or tires. From conversations with friends, this is not uncommon. It is so difficult going through the system to get approved for a new chair, and the client portion to purchase the chairs are so expensive, most people I know will keep their chair until it permanently and catastrophically stops working.
But even if the chairs were being fully recycled, would it not be worth spending the (surprisingly little) money to buy the colour alteration kit when sending to a new user with the payoff being that people are not driving around in all-black chairs on the streets in winter without any lights because they’re deemed an “upgrade” and not a necessity?
Simple solution #2 — fund lighting kits for wheelchairs and allow users to choose colours for their chairs that will increase visibility.
In anticipation of season 2 of Netflix’s Daredevil, which comes out on Friday, March 18th, I’ve decided to share some of my thoughts on the first season. If you haven’t read them yet, I’d recommend checking out Part 1, Part 2, Part 3 & Part 4 of my blog series first.
In anticipation of season 2 of Netflix’s Daredevil, which comes out on Friday, March 18th, I’ve decided to share some of my thoughts on the first season. If you haven’t read them yet, I’d recommend checking out Part 1,Part 2, & Part 3 of my blog series first.
In anticipation of season 2 of Netflix’s Daredevil, which comes out on Friday, March 18th, I’ve decided to share some of my thoughts on the first season. If you haven’t read them yet, I’d recommend checking out Part 1 & Part 2 of my blog series first.
It’s an understatement to say I was pumped up for the latest Netflix adaptation of Daredevil. I love Daredevil. Even when I hate it. I’ve always had a complicated relationship with the Marvel hero, largely because of how the series relies on Matt Murdock’s blindness to hide his super alter ego. Despite the utter failure of the 2003 Ben Affleck adaptation monstrosity, I had hope for this series because comic superstars like Bendis and Waid have brought a much needed sophistication to the series in recent years. With season 2 afoot, I felt now was an appropriate time to share my thoughts on the first season over the next few days to help get you hyped up for what’s coming this Friday! As with most reviews, the following may (read: definitely does) contain spoilers – consider yourself adequately warned.