Being disabled is expensive. Slap a label like “adaptive” or “assistive” on a product and the price skyrockets, just like that. It seems odd, doesn’t it? Exploitative? Yet, that’s what happens.
The free market was supposed to help us all. The invisible hand of competition was supposed to keep prices reasonable. We were supposed to have choice. Unfortunately, capitalism can’t accommodate markets that are too small to inspire competition, nor can it liberate us from monopolies that keep prices extortionately high. I don’t begrudge these companies the right to value the bottom line. People need to eat, after all. There’s such a thing as going too far, though. With basic Braille technology costing several thousands and wheelchairs so expensive you’d need a full-scale fundraiser to afford them, the landscape for low-income disabled people is grim unless they have access to substantial funding. Considering that we have to use screen readers, wheelchairs and other assistive devices every day, it’s not practical to expect us to simply go without. We’re not a manipulative community whining about handouts. We really do need these products, especially in professional and educational contexts.
Living as a disabled person can incur significant costs when adaptable housing is needed. Installing adjustable beds and stair lifts can become staggeringly expensive, and for those living in low-income housing, proper accessibility is by no means guaranteed. It’s bad enough to be chronically unemployed and live in low-income housing; but living in a place where you lose much of your independence adds considerable insult to injury. Don’t even get me started on the markups on prescription drugs. Even life-saving drugs routinely sell at a 400% markup (100% is generally what is considered reasonable). It no longer surprises me when I see the lengths to which companies will go to monopolize a market and shamelessly exploit people who are already disadvantaged. We’re not asking for a pity party, to be sure, but a little reason would not go amiss.
We’re not the only ones affected, either. There are numerous grants available from governments and charities, which are intended to ease our financial burden. For example, the Government of Alberta provides $8000 a year which is spent on assistive technology and disability-related costs while I’m at university. You would think that’s overgenerous—I certainly did—but even during years when I did not buy any assistive technology at all, the entire grant was put towards paying for the editing of inaccessible textbooks. What is more, the grant did not even meet the full cost; my university covered the rest. It makes my head spin a bit, it really does. Governments are well and truly stuck, because manufacturers of accessible products have few incentives to lower their prices. Why mess with a business model that is working so well? There is more competition than there used to be, it is true, but for the most part, prices remain astronomical.
Worse still, these companies have managed to convince charities and governments that their most expensive products are the best, in any situation. Even though there are other viable options out there, many school divisions and universities insist that JAWS, one of the priciest screen readers, is the only wise choice. Encouraging this view is advantageous, so companies are happy to charge what they do, knowing that someone will gather the necessary funding. The little things bother me, too. Take watches, for example: very few stylish accessible watches exist. Most are either obnoxious talking watches that draw a lot of unwanted attention (and make startling bonging sounds when you’re not expecting it), or braille watches (which aren’t braille at all, but tactile). These watches are generally affordable enough, but they are seldom fashionable. This may seem like a frivolous gripe, given the more serious struggles we face, but why can’t we have nice things? Why do we have to wear tacky accessories just because we’re disabled? I’m not a huge fan of braille accessories, but a lot of blind people are. Why can’t they have more legitimate selection? I mean, have a look at these charming braille hoodies: they say things like “peace”, “joy”, “Jesus”, and my personal favourite, “Can you read this?” The site boasts that you can “spark conversations with total strangers!” Uh, no thanks. If I really want to spark conversations with strangers, I’ll get a dog.
Simply having a disability is financially and socially punitive, and there are many who are happy to capitalize on the issue for personal gain. Certainly, this willingness to exploit customers is not unique to assistive technology companies. However, the problem is compounded when we’re forced to purchase necessary products, much as we wish we could do without them. It’s encouraging to see how many grassroots attempts to provide affordable adaptive products and services are emerging now. I am immensely proud of open-source screen readers and inexpensive mobile apps. We’ve come a long way. Nevertheless, I don’t think it’s wise to ignore the nasty elephant in the room: being disabled is prohibitively expensive, and few people know it.
The Albert A. Ruel Road to Blindness
A 21 year old man stood on the beach at the Sproat Lake Provincial Park with friends early in May of 1977, and upon gazing across the lake found the Gulf Oil sign missing from the dock-side filling station there. When this fact was shared with his companions they glanced at him with puzzled looks and said, “No Albert, the sign is still there”.
That was the beginning of a road through confusion, anger, isolation, loneliness and discovery for me. It all began with a visit to a local Optometrist who could see that my vision wasn’t right, but that corrective lenses wouldn’t help. He then referred me to a General Practitioner, where I received a clean bill of health and an additional referral. This time to an Ophthalmologist. Immediately upon peering through the dilated pupils, Dr. McKerricher was able to see the problem, Retinal Vasculitis.
Now, you would think that all would start to improve at this point, but that couldn’t be further from the truth. You see, CNIB, from 1918 until 1985 only served the needs of people who were “Legally Blind”, a level of vision loss I wouldn’t reach until November of 1979. The words of Dr. McKerricher still echo in my mind today, “Albert, I don’t know what has caused this and nothing we’ve tried is helping to stop it, and you’re not blind enough for me to refer you to CNIB”!
In the middle of this transition from 20/20 vision to “Legally Blind” came the Motor Vehicle Branch and it’s rules of the road. On August 3, 1978 I drove a car for the last time as my vision had reached the level at which operating a motor vehicle became too dangerous, further intensifying feelings of fear, isolation and anger. Sadly, through this period the only available guidance and support was through family and friends, but not the experienced professionals I needed at the time. Although these support systems are critically important they can often be smothering and facilitating, rather than encouraging and supportive.
With gratitude, and some trepidation I finally was able to access CNIB services in November of 1979, and the world opened up then. There I was able to meet other blind people and receive the daily living and mobility skills required to live independently in this sighted world. I learned elementary braille and began to discover technology as necessary tools of independence.
Thankfully, in 1985 CNIB’s National Board altered the course of service to visually impaired Canadians forever. They added a third prong to their Mission Statement, “To promote sight enhancement services”. This opened the door to all Canadians who were beginning to lose sight, as well as those who had a fear of vision loss to access the full range of CNIB Support and Rehabilitation Services. So now, whether it’s someone’s Mother who is experiencing Macular Degeneration, or an Uncle experiencing the affects of Glaucoma, all have the ability to seek information, guidance and support as all involved deal with the fear and anxiety that accompanies such life altering experiences.
With the help of professional Rehabilitation Workers and Employment Counselors I was able to continue traveling independently within my own community, and even more remarkably anywhere in the world I desired to go. I managed to attend College in Nanaimo and New Westminster, as well as traveling to the Mayo Clinic and to doctor’s appointments in Nanaimo and Vancouver without assistance. All of this while living with some usable vision, but not yet needing a white cane for travel.
During the mid 1980’s I was a stay-at-home Dad and did all that was required of that challenging work, from changing diapers to preparing meals, and from cutting the grass to maintaining our home. I even took a woodworking course through Alberni’s Adult Education program and built and restored several pieces of furniture. Of course the 1958 Chevy Impala in the garage was my pride and joy, and I devised ways to do much of the work it required.
I also joined and participated in many community activities, like the local Car Club, and a disability support group that catered to the needs of people with many different disabilities. Of course, continued participation in family life remained of critical importance through this period.
In 1989 a secondary condition began to extinguish the vision that remained, which set into motion a new stream of professional rehabilitation services and supports. By the spring of 1990 Glaucoma had turned out the lights completely, and the darkness I had feared so desperately was upon me. Strangely though, I found this to be a great relief rather than the tragedy I had imagined it would be.
Through several professional rehabilitation sessions, and by joining peer mentoring and advocacy groups I was able to come to terms with this strange feeling, and to learn additional skills and strategies for living with no visual cues of the world around me. This is also about the time that I decided to explore CNIB as an employer, and to see if I could provide the sort of guidance and support to others that had been my pleasure to receive. Those 14 years were a wonderful experience of ongoing discovery for me, as teaching may be the best way to solidify one’s own learning. In other words, those we assist through this transition in turn help us all as we develop best practices and improved service.
Following a 14 year career with CNIB I also served the blind community as the first National Equality Director employed by the Alliance for Equality of Blind Canadians (AEBC), and as a Basic Computer Literacy Trainer with the Canadian Council of the Blind (CCB). Most recently I have enjoyed coordinating the CCB’s newly launched Get Together with Technology Program in Western Canada, which brings to the fore my passion for assistive technology and the power of peer mentoring.
Without sight I have continued to travel far and wide, with trips to Conventions of and for the Blind in Anaheim California and Melbourne Australia, as well as to many events and activities in Toronto and Vancouver. Of course my work has taken me to many communities throughout Western Canada, and most particularly nearly all regions of BC and on Vancouver Island. None of which would have been possible without the services and support of organizations like CCB, AEBC and CNIB.
For most people blindness generates a fear of extended movement, both within one’s home and community, but that doesn’t have to be the case. Independence comes from personal desire and increased skill. Many community organizations can assist with both through their mentoring and skill development programs. I remember always that life has little to do with what happens to me and 100% what I do about/with it. There is a quote I like to use from the National Federation of the Blind in the USA, “With adequate skill development and opportunity blindness can be reduced to the level of a nuisance”, and nothing could be closer to the truth.
Helen Keller said many years ago, “There is nothing more tragic than someone who has sight, but no vision”. She also challenged the Lions Clubs of the world to become the “Knights of the Blind, and to take up the crusade against darkness”. I too joined a Lions Club in 1992 and continue to work on the crusade that Helen Keller began in the 1920-s.
View all posts by Albert Ruel
3 thoughts on “Resource Article: The Cost Of Disability: Or, Why We Can’t Have Nice Things, February 6, 2017”
Great article. Should put this on Facebook and or any other social media that you can
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This is just my personal oppinion. I sure would like people to give this some thought though as I do not say it lightly.
The truth is we’ve been lied to isn’t it. We keep being told that these are the only solutions. Mean while they patent away and make all this cash. I think we should have a serious conversation about kicking companies like humanware out if they don’t play ball. I could rant on about the gouge for quite some time, I more want you to consider this. We can make stuff for you man. Did you know that part of my family is in industry? NO write now we don’t have anything catering to blind people. Or any disability. I’m sure that could change if there was enough interest. I assure you we have no reason or wish to gouge anyone. And why should we? I could make more by charging a reasonable price for my products. A reasonable man who doesn’t spend all your hard earned or saved cash on his next suit.
Food for thought
OH YEAH! You donât need to tell me. However, the costs are not always measured in dollars. Sometimes they are more âpersonalâ! Cheers. Jim
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