Sappy media stories about "walking again"

I am going to get a lot of heat for saying this, but I really hate sappy news stories about paraplegics being able to "walk again" due to some miracle machinery.

It is in response to this story that came out a few months ago. A student, who acquired a spinal cord injury in 2007, is set to walk across the stage at his graduation at Berkeley, with the help of a robotic exoskeleton and forearm crutches.

While I am not against a cure for spinal cord injury (quite the opposite, actually), I really don't like the emphasis that some, such as the media, puts on the ability to walk.

This may sound bad, but hear me out. Read the news story. It puts so much emphasis on walking and portrays people who are able to walk as somewhat "better" than those who cannot. It is totally ableist -- its basic message is, "You're more worthy as a person if you can walk."

That kind of thinking is what propels millions of dollars into developing these exoskeletons, which are cumbersome and not useful for regular use anyhow. As it is right now, nobody is going to a) be able to afford them, b) use these regularly, and c) use exoskeletons as the "band-aid solution" to paralysis. With these issues, all those millions can be better spent trying to find a cure for spinal cord injury, don't you think?

I find that stories like these serve a "feel-good" purpose for able-bodied people more than anything. Not being able to stand and walk is the most visible complication of spinal cord injury, and this story makes people think, "Hey, we're making progress!"

That is not progress. Progress is not only finding a cure for paralysis, but also finding improved ways of managing the complications of spinal cord injury. Many (but not all) people with spinal cord injury say that the ability to walk is a secondary concern to other complications such as skin breakdown, pressure sores, bladder and bowel control, body temperature regulation, muscle atrophy, autonomic dysreflexia, and so on. I'd rather see improvements in handling those problems first, because some of these problems can be fatal if not treated properly! Meanwhile, nobody dies from not walking.

I'm sure this blog entry is going to create a lot of controversy for whoever comes across it. And to be honest, I don't know how many people would agree with me. But those are my thoughts and I'm sticking with them.

Equal opportunity employers. Kinda. Sorta. Maybe not.

"All animals are equal, but some animals are more equal than others."

--Animal Farm by George Orwell

I'm a pessimistic person in general. A lot of people are surprised when they hear it, but it's true. In my view, at the root of every person (even for me) is greed and selfishness, whether the person realizes it or not.

The same holds true for business. At the root of every business is greed and selfishness. Some businesses may have certain commitments or charitable goals, but at the end it is all about the bottom line.

Which is why they can't take a risk on workers with disabilities.

"We are an equal opportunity employer" is one of those things that ring hollow to me, right up there with the infamous cliché "We will keep your resume on file." It's something that a lot of companies have to say for one reason or another, whether it's true or not. I don't believe either one of those commonly-used sayings.

I have been actively looking for work for nearly a year now, with little success. Some recruiters and head-hunters have seen my resume and have noted that I have a lot of marketable skills. Some were actually quite shocked that I haven't had more luck.

I've landed several interviews. Except for one interview, one of the things that seemed to bug employers a lot (based on either their questions or their reactions to me) is the fact that I'm in a wheelchair. Some of these have claimed to be an "equal opportunity employers."

I remember one interview where the concern was not so much with the job itself but rather how I'm supposed to get to my job. Granted, it is in the Fraser Valley (which is a 45-minute drive away) but I repeatedly assured them that I can drive and have made the commute many times before.

Eventually, the interview contained about two questions about the job itself and about ten questions about how, as a wheelchair user, I would be able to perform my job. The funny thing about it is that the job is almost completely computer-based; I have the use of my arms, so it is strange that they would perceive my walking ability to be the biggest factor!

Now, some of you are probably asking: "Isn't it illegal to ask that kind of stuff?"

Technically, it is illegal to ask something like that in a job interview if it does not relate to one's ability to do the job. Some may ask about those things for the purpose of determining what accommodations (if any) need to be made, but that's about it. My use of a wheelchair does not affect my ability to do a job that is online- and computer-based.

Theoretically, I could raise a stink and turn this into a big deal. It would be a big black mark on the company. It would definitely get the interviewer in huge trouble.

But the problem with that is the same problem as going through border customs -- like a customs officer, the interviewer is your judge and executioner in many ways. They are the thing standing in your way to a job and career. You need to impress and please that person more than they need to impress and please you. If you cause a raucous, future employers will see that you like to rock the boat and cause a disturbance, and will hesitate to have a loose cannon like that in the company.

That's why I did nothing about it.

It's not right to have this happen, by any means. The fact of the matter is that discrimination in general is hard to prove, especially when it's often a "he said/she said" situation. If accused, the person could make up something about the job needing some manual labour better fit for an able-bodied person, whether it be lifting a stack of papers or whatever. There are so many ways to weasel your way out of a discrimination accusation.

Sometimes it's more subtle. I've had employers in the past act extremely uncomfortable at the fact that I'm in a wheelchair. I know it's not a good thing to do, but I purposely don't inform them about this fact unless I'm concerned about the accessibility of an interview location; I used to inform employers ahead of time but that often backfired on me so I stopped doing it.

Anyways, some employers act so uncomfortable that they would be in a huge rush to finish the interview early and rush me out of the room. Again, these are jobs that don't require the ability to walk and some were from "equal opportunity employers." For these, I knew I was ruled out as a candidate as soon as the interviewer saw me.

Is it any wonder why I don't buy into the whole "equal opportunity employer" statement?

Not all of it is bad. The one bright light I've seen so far is the University of British Columbia. I was interviewed for a position there. There was the initial surprise but that blew over quickly and I felt throughout my interview that they were taking me seriously. The only issue that came up was accommodations (mostly wheelchair accessibility) but they immediately said that it would be no problem. So far, they have been the best so far at backing up their "equal opportunity" statement.

Despite the progress made to breaking down barriers for those with disabilities, there is still a lot of work to do. There's a reason why stories like these and these and these keep popping up. It is easy to build a ramp and break down physical barriers, but the social and psychological barriers are still strong as stone and just as cold and unwelcoming.

Disability expos: some differences

First of all, I love disability expos. I think they're awesome. Sometimes I wish I had money and time to travel to go to them.

Why are they cool? They offer a great chance to do things like check out the newest gadgets (I'm a gadget guy), latest programs and actually see what is being done in the disability community.

It is interesting to note that in the two major expos I've been to in the past year, both of them have had different focuses. I don't know if this is due to funding or sponsorship, but it is certainly interesting.

Back in October, I went to an expo called Care Fair in Seattle, Washington. It is a combination of a disability expo and a series of lectures about various issues relating to disabilities (which you can attend in exchange for college participation credits or something, apparently). While it was neat to meet so many of our counterparts south of the border, I found that it was very corporate and most of the booths out there were advertising new products.

That was not surprising since the title sponsor was a Washington and Oregon health products provider. It was really neat to try out things that I've often only seen on YouTube or on other sources online. I got to try out a wheelchair that lifts users to others' eye levels. I got to see what kind of new wheelchair technologies were being prototyped. I got to try out a stander that did its job so quickly that my legs immediately spasmed all over the place once it lifted me to standing position. (That was scary too.)

It was almost like being a kid in a toy store. While needing to use a wheelchair can be annoying, I've always found it fun to try out new stuff because you never know when you might want one (assuming the costs are manageable). A lot of these products are not as widespread or readily available in Canada, which is a shame. I would often need to drive to Bellingham in Whatcom County or Seattle to obtain them. Some Seattle dealers are also willing to travel to Whatcom County to meet customers.

Fast forward to spring. A few weeks ago, I went to Vancouver's own disability expo at the Roundhouse Community Centre in Yaletown, presented by the Connectra society. Being my first expo in my own hometown, I was somewhat expecting something similar to the one in Seattle. I was surprised to see that products took a backseat to things such as social services, organizations and resources for people with disabilities. There were a few products being promoted there but they took on a secondary role.

The Disability Foundation posted a video of the Vancouver expo:


I don't know if it is a USA vs. Canada or a corporate sponsorship thing but the differences between the two are huge. I had a great time at both of them and each one has its own merits.

I see the advantage of having a product-focused expo. I learned a lot about the different products available and what new things are being developed. Because of this knowledge, I can decide on buying new products without falling for sales tactics that try to convince you that you need a certain product when you don't. I can also pass down this knowledge to other people I know. By testing out the products for myself at the expo, I can now tell what things I'd love to obtain and what I can do without that I previously wanted.

However, having an expo similar to the one in Vancouver is beneficial for those who are more focused on how to get involved in society. It is no longer about companies trying to sell things to you but rather societies trying to get you involved in their happenings. It is about the person, not the person's equipment. There are so many groups out there that people may not even be aware of and it is a great opportunity for them to make themselves known.

One thing I would love to see in Vancouver is a combination of the two approaches at a larger venue like the Vancouver Convention Centre downtown or the Trade-Ex in Abbotsford. An expo combining the two approaches has the potential to be one of the most popular disability events in North America, lining up comfortably with the existing Abilities Expos in the US that happens every spring and summer. It could attract people from all over Canada if done properly.

There is a lot of potential around this area for disability events. Hopefully these two events are just preparing us for something much larger in the future.

Discrimination: theory and practice

There is a huge difference between countries when it comes to discrimination laws. Some have very "progressive" laws and some have very "outdated" laws. What is always interesting to me is that regardless of how "progressive" or "outdated" a country's laws are, there are some things that remain the same in many places. When it comes to discrimination against people with disabilities, it is made even more painfully obvious.

Currently, I am in search of a steady job. This is no easy task in this economy and particularly in British Columbia (thanks, Gordon Campbell!). While theoretically employers are not legally allowed to discriminate in their hiring practices, there are so many ways in which they sneak around legal requirements and sometimes they are not aware of the challenges that some people face.

Right now, I've been searching for almost anything that I could get my hands on. Originally I thought that a clerical position in an office would be okay since I am fine with computers and communication. However, I am often surprised at how many clerical positions that mostly involve typing, preparing documents and answering phones require "the ability to lift 20 kgs or more." 20 kilograms is just short of 50 pounds. 50 pounds! That is the weight limit of a piece of luggage on an international flight.

I have no idea why a clerical position would require you to lift that much, but one possible reason for posting that is to basically say, "You must be able-bodied to apply." It is clearly discrimination but skirts around the law by listing it as an essential requirement of the job. It's maddening. Other ads have variations of that lifting requirement (usually 10kg or 15kg) but the message is clear.

After outright discrimination, there is widespread ignorance as well. Someone I know from wheelchair sports once applied for a job and got an interview. She is an incomplete quadriplegic, which means that her arm and hand function is impaired by her spinal cord injury. In particular, she has little ability to grip or use her hands.

One day, she applied for a job that she was otherwise qualified to do. During the interview, the employer asked her about her typing speed. She reminded them that she is a quadriplegic and they responded by, "Take a guess." Ignorance is the more likely reason for this but it is also cruel considering her circumstances.

Another instance was when someone I know landed a job at a restaurant. He knew I was looking for a job and suggested that I apply as a waiter there. I reminded him that I was in a wheelchair and that job wouldn't be suitable. He then suggested that I be a bus boy. He didn't even realize that he kept suggesting job positions that would simply not be the best thing for a wheelchair user. He didn't realize the logistical and practical problems one would face in such a job without the ability to walk or stand.

In Canada we would like to think of ourselves as progressive and inclusive. In my view, that is sometimes a problem because we pat ourselves on the back for a job well done while ignoring the things that still have to be done. It's the same problem in the US -- we can remove the physical barriers for people with disabilities and change laws, but we get so self-satisfied that our social attitudes don't change with the laws properly. Canada's attitudes towards those with disabilities are sometimes not too different from countries that have "outdated" disability laws.

This is not to say that Canada has not made progress. We have made huge progress in recent decades. But we should stop feeling so self-satisfied about what we have accomplished and continue to strive towards not only physical and legal inclusion but social inclusion as well.