Technology has changed wheelchairs with lighter materials, ISO design and streamlined design. Engineers have listened to wheelchair users defining their needs. Yet there is still a tension between the medical view and the social narrative of impairment. The first aims for a “cure” that will normalize the body to fit the environment. The second says the problem is with environments which allow only one “right” way of moving.
Luke Anderson, Founder and Director of StopGap Foundation
Interview by Dorothy J. Smith October 25, 2017.
Transcription by Jenn Ko.
The interview has been edited into three sections for length.
Luke Anderson (LA): My name is Luke Anderson and I am the founder and executive director of the Stop Gap Foundation based out of Toronto. In the fall of 2002 I sustained a life-changing spinal cord injury as a result of a mountain bike crash and as a consequence my C-4/5 complete level spinal cord injury requires my use of a power wheelchair with tilt, which helps with posture on inclined surfaces. So my mobility aide, my electronic device that is notable is, in my mind, my power chair. That is my car, my shoes, my legs, my independence machine.
Dorothy J. Smith (DS): It’s a powered one, so unlike the early Everest and Jennings chairs where the guys - the World War 2 veterans would be able to fold it up and throw it into the back of the car. I'm guessing it’s a little heavy for that?
LA: Yeah this chair does not, with me in it especially, does not lift easily. Not to say that it’s impossible but it doesn't fold up, it doesn't break down, it doesn't fit nicely into a trunk of a car. Yeah there's special accommodations that need to be made to get me into conventional -lets say- spaces. So spaces that aren't "accessible" like vehicles, cars, sedans, vans that aren't modified. I would say with complete confidence 3 out of 4 businesses in most communities- those being businesses with stepped entry ways.
DS: When I was walking around I saw a fair number in the older districts. Are they still building them that way?
LA: Well, yes. Believe it or not. There are new town homes, so low rise, 3 story, maybe a rooftop patio, 3 story town homes with stepped entry ways being constructed in the city still.
DS: I'm been reading the interviews that were done in the 90s of people who often came back from World War 2 and had various levels of spinal cord damage and the activists then, starting in the 60s, started pushing for new building codes, ramps on sidewalks, all kinds of things. That's the 60s. We're 50 years later? Has there been any improvement?
LA: I think there has been improvement, but has there been a real monumental change? Like we experienced during the time that you just mentioned? No, I don't think there has been. And that’s what fuels my fire to get this issue on everybody radar because it's not just people like myself who use a wheelchair that encounters these issues. We are all affected by inaccessible spaces. Those that don't have a mobility restriction are affected by affiliation if they are accompanying somebody with a mobility aide that can't access the space. Maybe that person becomes a parent and needs to push a stroller and all of a sudden their mobility changes. Or they get a job where they have to use a cart and bring heavy packages and items into a building. Their mobility changes. We develop an injury or an illness and again our mobility changes. And as we age it’s inevitable our mobility will change. We’ll all of a sudden - all of those groups of people will need to rely on some form of barrier free amenities. It's not just someone with a disability, it wasn't just those World War 2 veterans that immediately benefited from the code changes, the bylaw changes that were enacted because of their advocacy and awareness that they worked so hard on. We've all benefited from those changes that happened then.
DS: But you've developed something very specific around this issue. You saw the problem and there's the advocacy issue, telling people to change, which is what they did in the 60s and the 70s and the 80s and the 90s, but could you tell me about what you have done? The involvement you did in a design development to address the issue.
LA: To address the issue we wanted to draw people attention to it. And we thought – well why don't we paint a bunch of ramps really bright colours, really simple deployable access ramps made of wood, custom suited for the step, and come up with really simple website as well where people could go and learn more about the issues that we wanted to raise awareness about. And we’ll stencil that website right on the ramp so people can go and get the information they need should they be inspired to. So that has been our main vehicle of driving people to learn more. Driving people towards the information where they can learn more about what we do. It’s has been very impactful and successful. Very simple project. Four pieces of wood and some paint can raise awareness and can get people talking about these big issues that affect all of us and also get people in the door. That is a secondary to the project. I would say the primary goal is to get people talking.
Interview section 2 - Accessibility and Building Codes (Interview 14:12 minutes)
Dorothy J. Smith (DS): You're a civil engineer. You brought the experience of trying to access a space, but also civil engineering knowledge. How did that work out together? Did civil engineering drive the ramps? Or just you knowing how you use a wheelchair?
Luke Anderson (LA): I would say both. My inability to access space using my chair, I recognized as a problem. and I used my problem solving skills developed from my training as an engineer and working in the industry for 10 years to help solve that problem.
DS: One of the things I think about with civil engineering is they work within standards as well, they work within codes - codes address something like how steep or how shallow a ramp has to be to be safe for a chair, and for different capabilities of chairs.
LA: Absolutely. Building code specifies very strict guidelines around how a ramp needs to be sloped, a permanent fixture to an entryway or within a space or venue. But it doesn't address temporary elements. So these ramps that we've been building are merely devices and we associate them – or we group them similarly to, we group them in the same category as the business owner would their cash register. It's a device that helps their business – a simple device that helps their business. Now because our ramps are not to code, because they’re temporary, they can have a slightly steeper slope. And over the last 6 years we've come upon a rise to run ratio that generates a ramp that is of appropriate size in our opinion to be safe to the majority of users and be manageable in terms of mobility, lifting essentially it or storing. So there's a delicate balance between those two issues. It needs to be portable, easily portable, and needs to be safe. Relatively safe for the bulk number of users using it.
DS: Are there users who would not be safe using this? They could warn people?
LA: We've received feedback about our ramps being steeper than what code would ask for. For sure. And we understand that at 1 to 6 that’s a steeper slope – that’s 9 degrees compared to the 1 to 12 code requirement for a permanent ramp. There's a shift in risk and liability from the municipality and the designer (professional engineer or an architect) in a typical situation where there is a permanent implement that is installed through permitting process, perhaps a variance to encroach on city property. All of these pieces are in place to protect the building owner and the public. So when that isn't in place, when there isn't a permanent process - or permanent construction process in place - the question is where does liability shift? And that’s to the business owner that is using the ramp. So in our case with our devices - our ramps. temporary deployable ramps - the business owner takes on the risk and liability and they sign a waiver that holds them to that.
DS: Does that scare them?
LA: In some cases, but not many, believe it or not. Very few. They understand the waiver is drafted in a way that clearly articulates how the project is to be run and the ramps are to be used on a request basis under their supervision. That's what the waiver in a nutshell outlines. But what you’ll find in most communities where our projects have reached, most business owners leave them out. They are taking matters into their own hands because they risk eventually, potential litigation. They risk getting a bylaw encroachment infraction by the municipality. So they open themselves up to risk. The flip side is that the ramps are out there so they get noticed and a user doesn't have to contact the business owner from outside. Just imagine yourself using a chair, wanting to get into your favourite store, it’s raining outside and you just want to get in to the darn store. In most cases the ramps have been left out and, again. business owners take that into their own hands. But what’s happening is municipalities are recognizing that that’s an important thing. That’s the case here in Toronto. The city has recently passed a motion to figure out how businesses can leave their ramps out, which means digging into the bylaw and figuring out how to adjust it to make that happen, which is exciting. And that really speaks to the disruptive capacity of our project. It’s a really important element in change and perspective shifts and creating change.
DS: I like when you say disruptive but did you have to go and knock on city hall’s door to get them to see it? Did the store owners or just the bylaw people started to notice it and the question floated up?
LA: Exactly. So bylaw officers noted the ramps out there. They threatened 2 business owners with fines and that news went viral. The media wrote stories about that and that’s what really got this issue on the radar of policy makers here at city hall in Toronto.
DS: Had you already raised awareness with the press? With the newspapers?
LA: Yeah. So our first project in the Junction generated some great media attention. There was an article that was written about the project in Now magazine and that really helped raise awareness and get the message out and, well, pushed us to do more of the work that we thought would only be a one off.
DS: You thought it was only going to be one off, just the Junction?
LA: Yeah, we were just keen on just getting this out to one neighbourhood and see how it went. But we had no idea that it would explode into a full-on charity. Ha! Registered Canadian charity.
DS: I know it’s in Ottawa because when I mentioned to a person that I was doing this interview she said, oh those are the ramps, oh yeah, they’re in our neighbourhood. I've seen them.
LA: Yeah, we have a project in Ottawa and Ottawa is one of 50 different communities that’s participating in some shape or form.
DS: From the map I saw you go as far as I think B.C.
LA: Yeah. Coast to coast. We have projects in Charlottetown and Halifax on the east coast. We have a project in Prince George, Richmond, B.C., Calgary and Manitoba. Saskatchewan, I don't know what’s going on in Saskatchewan. Maybe just because it’s really flat there or it could be the time change thing.
DS: With you being a civil engineer, I keep coming back to that, because you have special training. You're aware of code, you’re aware of standards but these things change across the country and not everybody who's heading things up in any community necessarily thinks in that way. Sometimes you have to talk to bylaw people that way to get someplace. Do you find yourself giving advice to them in terms of what's dangerous, what’s not dangerous, what works, what doesn't work?
LA: I can bring up a story that happened last winter. There’s a business owner with one of our ramps on Roncesvalles. It was a larger ramp that encroached on city property and bylaw enforcement flagged it and - well they’re purveyors of the code. They’re doing their job and anything outside of that gets deferred to the next person up the ladder. So I respect that. 18:34 And their knowledge of anything outside of (I'm making a large generalization here) but in most cases their knowledge of anything outside of the codes that they enforce is limited. So it didn't... it made sense to me that this was the reaction that happened and their enforcement went to the point where... well, the conversation led to this understanding that there was some ignorance around our human right to equal access. So as Canadians that’s in our human rights code. 19:30 We all have a human right to equal access. Now there is a clause that says you can't inflict undue financial hardship on an organization or an entity. So there’s that, that would override enforcement of having an organization provide access, equal access. But essentially, all of those, in my opinion, all of those stepped entry ways, all of the business owners who own the buildings with stepped entryways are in violation with our human rights code. And that is what we discussed on the sidewalk in front of that ramp last winter. That really helped shift the conversation from the codes that are being enforced today and how we could get everybody around the table and talk about how we can address these issues. So there’s our human rights code but there's also our Accessibility for Ontarians with Disabilities Act here in Ontario which mandates that Ontario be fully barrier-free by 2025. If you read the quick overview of the AODA, that is the sentiment...that is what you will come out understanding. That we are to find ourselves in a barrier-free province by 2025. Which is a really challenging task but I think it’s a really important guiding light. Do I think that it’s possible? To find ourselves in a fully barrier free Ontario by 2025? In 8 years. I don't think so but I think it’s a really worthy quest to try to get there. So we had to come out of the muck and talk about things on a higher level instead of the nitty-gritty code requirements that plague our construction practices and our bylaw enforcement today.
Interview section 3 – Change the Environment or Change the Technology? (Interview 18:23 minutes)
Dorothy J. Smith (DS): You're talking about in effect changing the environment as opposed to giving you a different tool – a tool so that you’ll have to change something. Which way should the technology push towards? Changing the environment or giving individuals who use a chair or who are using a guide dog or a cane? Who do we change in your opinion? Where is the best bang for access?
Luke Anderson (LA): That’s a really great question. I think there's room for innovation on both fronts. I don't think that it’s a one or the other. I think both have to progress at a similar level. There's so much room for... It's an untapped market. It really is. There aren't a lot of solutions out there for building owners. There's some really, really expensive solutions, very limited expensive solutions. So I'm driven to inspire a younger generation of difference makers of champions, in design thinking to learn about these problems and start thinking about some solutions to them. Now more individualistic technology or assistive devices perspective - yeah I think there will always be a need for further developments in certainly wheelchairs and other mobility aides and other assistive devices for sure.
DS: Your's is a low tech solution. This is going to go to the IEEE, who tend to think high tech. Professor Adrian Chan does system designing around prosthetics. Which is going very high tech these days. And that makes them expensive. Where would you push if you were told, you now run the universe. Where you would say, let’s put your energy?
LA: Are you building off your previous question?
DS: Yes. In terms of the kinds of technology - high technology, expensive technology, electronics technology, or very simple technology as you did with the ramp.
LA: I’m all for very straight forward, simple solutions. The simpler the solution the better. Not to say there isn't room for sophisticated, highly developed and intricate design. There's definitely room for that but it has to be affordable and it has to be within financial reach of most. Not everybody that – well - the group of people that have sustained an injury and maybe have insurance to support any adaptations in their life on a technological basis, they are in one group but what about the other group that maybe doesn't have that type of support financially? Where, what are the solutions available for them? And the answer to that is – well, limited. It’s limited. There’s a whole suite of offerings out there for people who may have sustained a spinal cord injury, for example of different wheelchairs. All kinds of them, all kinds of technologies and amazing bells and whistles. But for those that don't have that type of assistance and are relying on government programs, there's two or three. So limited, very limited. So that’s why I'm saying there’s lots of room for innovation and I think it has to be cost effective solutions. Simple, cost effective solutions.
DS: For those people who are told they have all this choice, but do people get a lot of advice to what it is their particular needs are or is it what the salesman sells?
LA: I think it’s really important to do your own research and not have a salesperson pull any wool over your eyes - potentially pull wool over your eyes. That's my take on that one. For somebody that can enjoy opening a menu and having a choice of a bunch of different stuff, a bunch of different items - yeah it's important to try the shoe on before you end up buying one pair that may not be best suited for yourself.
DS: Is the rehabilitation system oriented towards people – not picking and choosing – but getting a chance to try different things and say no this doesn't work or it does work?
LA: I guess I can just speak from my own experience. Yeah, I was given, from the limited selection that I was able to choose from, I was given opportunities to try different pieces of equipment.
DS: The rehabilitative people were not dictating, is that fair?
LA: Well they were shining, they were opening doors. And I was certainly given the opportunity to choose which door to go through. From what I remember, that was what I was offered.
DS: When we started you said the wheelchair is your independence. But some people look at a wheelchair and think oh, poor person stuck in a wheelchair. They don't see it as an independence thing. Is the attitude starting to change? Seeing the person and not the chair?
LA: Slowly. Yeah, I think so. Very slowly we’re starting to see language that puts the person first. We’re starting to see organizations and communities adopt symbolism that also puts the person first. Symbolism meaning our proposed wheelchair – or accessibility symbol. Our current access symbol with that stick figure, very boxy - very static, the proposed one has a much different tone. One of mobility and action. My eye is drawn to the person and not the chair. So there are these movements that are happening that I think are raising awareness and removing some barriers in language and symbolism. Yeah that put the person first and start to create awareness about our uniqueness and our... well... us being people and having all kinds of different unique abilities regardless of our situation.
DS: Your sister is a public school teacher. An elementary school teacher. I gather you talk to elementary school children. How do you find they respond to having you wheeling into the classroom.
LA: Oftentimes a little freaked out. Most of them they have never met someone with a disability or someone that uses a wheelchair. So there's some unknowing looks in the audience. But once I start to tell my story and share some facts about my life and give them an opportunity to ask some questions. Those looks change into looks of interest and excitement, inquisition.
DS: You haven't enough years yet to talk about things have changed over time. When we have engineers in our history department taking a forced class for the engineer they don't seem to be too interested in history. But have you talked to older people and heard from them how things have changed?
LA: No, not so much. We haven't really talked specifically about how things have changed. We are working now with CARP, Canadian Association of Retired Persons. We're having conversations about the importance of age-friendly communizes and living in place. Aging in place, I should say. That concept of having a home that can accommodate the aging process.
DS: Including being able to just get through doors I imagine which people don't think about. In terms of technology – I keep coming back to the technology but it’s gets also into how people view the technologies and the change technology has made. There was a point where the only people who used a chair were the very old, the very sick. Then World War 2 happened. All of a sudden you’ve got young veterans using a chair. Would you put the technology as pushing a change? Or is it the people who use the technology who make the change.
LA: I think there's been some people, like the veterans out there, who in the past and present day are … they’re loud spoken and they’re real advocates for - well, making their life even better. They want to live independently so they don't want to live for example in a retirement home or long term care facility. They want to live in their own place, hire their own staff and have control over that big part of their life. So that’s just one example of how someone's desire for independence really changed the way that someone with a high level spinal cord injury can live. And can enjoy life, can be empowered to really reach their full potential.
DS: If someone said okay we’re going to include you in a project and let's think about new aids. Is there a certain way you would direct where the technology should be pushing, things you should be addressing? New technology?
LA: Yeah, following a simple design process of identifying the problem or problems and coming up with some potential solutions to that problem. Prototyping the system or design. Putting it through a rigorous experimental period, coming back to the table, looking at how it went, for a specific amount of time, and reviewing what worked and what didn't, tweaking it and putting it back through the cycle.
DS: We now have a wide range of people who are outside, using the streets, going to restaurants. In 1950s it was just the veterans. We used to have children with cerebral palsy in institutions, the elderly were often left at home. Even people with polio were often still left at home. Now MS, cerebral palsy, whole wide range of things, Parkinson's, everyone has different issues, and even on an individual basis. Is there a way to cost effectively address each person? and to get them their access?
LA: I like to use the concept... The way I'd like to answer that question is with this. I believe that it’s our environment that we live in that are disabling. So it’s the spaces that we live and work, that we play in, that hold us back. It's not us, it's not people that have disabilities, but it's really our built spaces that hold us back, that are the disabling factor. So if we can start to design, build and construct our communities such that there are no barriers (I know that’s a tall order) but if we can minimize the barriers in our built environment, I believe that that will make for a very empowering experience.
DS: So we give the power back to the person.
DS: …Is there any thing else...?
LA: I think from a business owner’s perspective, people with disabilities and certainly as the boomers find themselves with changing mobility, there’s a large untapped market. There's a lot of buying power from those groups of people that a business who doesn't have barrier free access is missing out on. So there's a big business case for creating a barrier free space. There's also, now I don't have specific metrics, but I know that hiring people with disabilities, I mention this because there's a 57 percent unemployment rate of working age people with disabilities, hiring people with disabilities can be very beneficial to your business. For a number of reasons - morale being one of them.
DS: Morale for the business?
LA: Morale for the staff. Again I don't know specifics but there is proof that hiring people with disabilities is a good thing. And of course, as long as the space is good to go, if there are no barriers that prevent someone from accessing their place of work and excelling - so going back to your question about whether the space should be adapted or whether it's the persons that needs specific assistive devices to help them - I think there’s a need for both. So the venue that this person might be working in, it’s best if that venue is barrier free. But we also have to look at any implements or assistive devices. What can be put in place to allow them to do their job most efficiently. Because the space, the built form of the space, any efforts that are made to make it barrier free, benefit everyone else. It would be hard to argue that it wouldn't. Just from other examples that I've already talked about. But we also have to make sure that person is set up to excel with their own specific assistive devices. And from the same source where I am referencing this, that it is beneficial to hire someone with a disability, apparently it only costs about 500 dollars, generally, to have the assistive devices - to pay for the assistive devices needed.
DS: You keep saying we. It's been a we from the beginning?
LA: Oh yeah, for sure. Volunteers, friends, family. There's a lot of people behind this work.