The Cost Of Disability: Or, Why We Can’t Have Nice Things

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.

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Don’t Be Fooled: Love Hasn’t Won…Yet

On June 26, 2015, the US Supreme Court ruled that same-sex couples now have the right to marry in all US states. Many took to Facebook, Twitter, and other social networks to celebrate that the US had finally achieved marriage equality. Not everyone was ready to celebrate just yet, though. Alicia, who is blind, is intimately acquainted with the marriage inequality plaguing less visible minorities in the United States. While everyone is rejoicing that love has won, Alicia finds herself unable to keep quiet. While she and her fiancé (also blind) do not receive the hatred and scorn that same-sex couples do, they still suffer discrimination which, while much quieter, is just as meaningful. According to Alicia, we have a long way to go before #LoveWins. This is her story, so I’ll let her tell it.


When Meagan asked me to guest-post on her blog, I was honored. This issue is near and dear to my heart, but I hope to write out my thoughts without turning this post into a rant.
While my friends on social media were celebrating, I found myself furious. Marriage equality is not yet a reality. I know this because I cannot marry the man I love … and I don’t foresee a day when that will change.
The United States has marriage penalty laws that will affect anyone who is receiving government benefits. These include SSI (Supplemental Security Income), SSDAC (Social Security Disabled Adult Child), and, perhaps most importantly, Medicaid. These programs are income-based and, once a couple marries, that income is considered “joint”. Therefore, if you and/or your partner are receiving any of these benefits, marriage may put you over the ridiculously low income limit. This assumes that married couples have a higher joint income than they would if they were single but, as is the case with many disabled couples, this is far from guaranteed. Even with joint income, most of these couples are still unable to cover needs such as shelter, food, and medical care (especially the latter) without assistance. Given that a very high percentage of people living with disabilities is unable to work, these penalty laws prevent many disabled couples from getting married, despite their commitment to and desire for marriage. Social Security is sneaky about this. Program criteria states that if a couple is “holding out to the community as married”, that couple can be considered married for Social Security purposes, and lose their benefits. Unsuspecting couples–who accidentally find themselves within Social Security’s criteria for “holding out”—could lose their benefits, leaving them with very little recourse, if any.
My fiancé (Mark) and I both receive Social Security benefits and health coverage through Medicaid. If we were legally married, our cash benefits would be cut dramatically if not entirely, and we would both certainly lose our medical coverage. I have several physical health issues that would make my situation precarious. Even worse, my partner has cancer requiring aggressive expensive treatment. There is no way we could afford this if he lost his medical coverage, which forces us to choose between marriage and his cancer treatments.
I hasten to point out that these laws do not only affect people with disabilities. They unfairly penalize the elderly (often low-income) who are only able to cover their increasing health needs with programs like Medicaid. A friend told me a story about her Grandmother, who had lost her first husband. A year later, this elderly woman met a man she wished to marry. Marriage wasn’t an option, however, because they would both have lost their medical and Social Security Benefits. The choice: stay unmarried, or forfeit the funds that would cover essential medical and living expenses. The solution, whether for a young disabled couple, or an elderly couple with no disability at all, is to cohabitate, and make it abundantly clear to everyone that they are either roommates living together for economic reasons, or nothing more than boyfriend and girlfriend. I, like many others, cringe at having to refer to someone I love more than my own life with the same term a high school couple dating for a week would use for one another, but it is what we must do to secure our living and medical expenses.
When I first started discussing this issue on social media several months ago, I was surprised by the reactions I got, particularly from those within the disabled community. Many asked me why I was so upset: after all, Mark and I were married in our own hearts. Why did we need a silly little piece of paper? Weren’t our own feelings toward each other good enough? The answer is no. The even more infuriating thing is that many of the people giving us these platitudes were the same ones that were telling LGBT couples to keep fighting the good fight, and not give up until they were granted equal rights. No one told these couples that “it’s just a piece of paper.” So, why does this attitude change for couples like Mark and Me?
In the early days of the fight for gay marriage, the concept of Civil Unions was created, which gave same-sex couples the right to be at a partner’s bedside, privy to their medical information, and other rights of marriage without making it legal. For the most part, the LGBT community refused to accept this. For many that I talked with about this issue, it was the system’s attempt to placate them: “we’ll give you half of what you want, but not your heart’s deep desire.” Given that, even when civil unions were offered, same-sex couples continued fighting for the fundamental right that is legal marriage, and were encouraged to do so. Yet there is not even an option for civil unions for those receiving benefits like SSI, sSDAC, and Medicaid. In fact, we can lose these benefits by simply appearing to be married—no piece of paper necessary. Not only do we not get our heart’s desire, but we must go to the other extreme and make sure we don’t join our lives in any way beyond that of roommates.
People (some of them disabled), have come up with another argument concerning why they think I am wrong about this country still not having marriage equality for all. Their take is that prior to the Supreme Court ruling, a same sex couple simply could not get married, no matter how much they wanted to. It was just not an option. They argue that couples such as Mark and I could go down to the courthouse today, apply for a marriage license, and get married by a Justice of the Peace in record time. These people claim I have no argument, because Mark and I are simply choosing not to marry, rather than being unable to. on the surface that logic would make sense. But what happens to us after that marriage ceremony in the courthouse? Do we go off on a honeymoon and begin our lives as happily married people? No. Letters would begin arriving in the mail, announcing that the Social Security benefits which provide for our basic necessities for daily living have been reduced or cut off altogether. Next we get letters that announce that coverage for Mark’s life-saving cancer treatment has been taken away. What do we do then? We are not the only ones in this situation, and many people who wish to marry face disabilities and health difficulties even more severe than ours. Marriage or cancer treatments…not a real choice. For Couples where one or both partners is even more seriously disabled, this is not a choice, either. Marriage, or life-sustaining medical equipment, skilled in-home care, medical procedures….not a real choice. Marriage or food on your table, shelter over your head…this does not sound like a real choice to me.
My friend Amy likened this issue to the poll tax laws that many states had from the late 1800’s all the way up to 1966. Strictly speaking, blacks, whites, women, and Native Americans all had the right to vote….so long as they paid the required poll tax, and (in some states), passed a required literacy exam that showed they were educated. The makers of these laws knew full well that on the surface they would look like progress. Proponents of the poll taxes and literacy tests claimed the laws were perfectly equitable: after all, everyone did have the right to vote, and everyone wishing to exercise their right was required to pay these taxes, regardless of race or gender. What the lawmakers would not publicly admit was that there were groups who would be disproportionately unable to pay, such as African-Americans, Native Americans, women, and even impoverished white people. The sums of money those states required are literally pocket change to us in 2015, but they were exorbitant amounts of money at that time.
The reality was that the poll taxes and literacy tests were quiet ways to ensure that only select groups would be unable to vote. It could have been said to anyone at that time, “Oh you could go vote, you’re just choosing not to.” Technically, this would have been correct. Yes, a person in a minority group could have gone to their local courthouse and cast their ballot, but were faced with a choice that was not really a choice: use the money they often earned with back-breaking labor to exercise their right to vote, or feed and shelter themselves and their families.
Fast forward to modern day and the Federal marriage penalty laws. There are no laws on the books that explicitly state that people with disabilities or those who are elderly cannot marry. There are no rules that explicitly state that those receiving Social Security and/or Medicaid benefits are not allowed to get married. There would probably be a public backlash if the laws were this blatant. Like the historical poll tax, it is a very insidious form of discrimination that most people are unaware of. Many advocates who are aware view it as a quiet form of ableism and ageism.
They theorize that lawmakers are aware that people receiving benefits from these programs largely fall into the disabled or elderly categories. In the minds of many young and/or able-bodied people, these groups should not be allowed to marry anyway. The theory is that Federal laws penalizing recipients of these programs for marrying are just an easy way to ensure that this does not happen, while not being outwardly discriminatory. While I have yet to make up my mind whether I entirely agree with this, it would not surprise me to find it was the case. Therefore, it baffles and angers me that people continue to claim the US has achieved marriage equality for all, just as it would baffle and anger me if someone claimed the poll tax set-up was voting equality for all.
When Mark and I mention our plight to friends, family, medical professionals, etc. Our pain is minimized, more often than not. We get statements like, “Oh, you don’t really need marriage, you know how you feel about each other.” “It’s a silly paper that doesn’t mean much.” Really? I beg to differ. The gay rights movement didn’t see it this way, and though their fight was long, drawn-out, and in many cases painful, they eventually achieved enough lobbying power to get the laws changed. I can’t help but wonder: where is our lobbying power? Where are the groups that will rise up, go to our Congress people, and try to create awareness and change for the millions of couples who are disabled or elderly? Where are the Hollywood celebrities? The musicians with world-wide fame? The high-profile athletes? Where are all the people who helped fight for same-sex marriage? What no one has appeared to consider is that the Supreme Court decision now bring same-sex couples who receive these benefits under the same discriminatory rules. While awareness of this issue is growing, I’m not sure that the disabled and the elderly communities have enough numbers to push such change forward. Collective action is often most effective, but groups/organizations who recognize this problem and its seriousness are few and far between. Those that do exist are often very small groups without the ability to attract the high-profile audience that is needed to get the attention of those in power.
I’ve known of these laws for years, and they have always disgusted me. Unfortunately I never thought to help advocate for change, because I never envisioned meeting anyone I would want to marry. Now I have, so these laws have become very personal. I wish now that I had fought to advocate for change before this issue became so personal to me, but like so many of us, I failed to act until an issue touched my life directly. However, now that it has, I will continue to work to create an awareness of this discrimination, and do whatever is in my power to see the laws changed. I hope this post will be a step in that direction.

Sorry, You’re Not Disabled Enough

Well, I’ve done it: I’ve taken the monumental step of applying for disability benefits while I finish my final year of university and join the ranks of those desperate students looking for gainful employment. After almost a full year, my application has finally been dealt with … and it has been denied.

On my application, I stressed that, while I am fully capable of working, employer attitudes—as well as workplace accommodations—pose a serious challenge. Even if I have all the right skills and knowledge, an employer is likely to skip over me in an effort to avoid hardship. I can’t even blame them, really. No one likes to take a chance on what they perceive to be a wild card. I know, I’ve been there before. (That’s another story for another post.)

Despite my attempt to explain the challenges I face, the person who reviewed my application remained unmoved. I should, she wrote, go out and purchase assistive technology (she did not specify which technology, nor did she specify where I was to get the money for such purchases). She went on to say that, once this technology has been acquired, I should have no problem finding a job. I’m not sure she realizes that setting up just one laptop so that I can use it can cost $1000. A braille display can cost $3000. If I had that kind of money lying around, I wouldn’t be applying for benefits, now would I? She concluded by informing me that I was not disabled enough to qualify for benefits. In closing, she advised me to make use of job searching tools.

Not disabled enough. Now that’s a new one. All my life, people have been assuming I’m more disabled than I actually am, and now that it matters, I’m being told my disability is, in essence, irrelevant when it comes to job searching. What I find interesting is that many blind people in Canada, the US, and the UK have little difficulty obtaining disability benefits based on blindness alone. I have other disabilities which hinder me as well, but even with all of those, I’m told to go out and buy some tech. No mention of how I’m supposed to convince reluctant employers to give me a try. No mention of how I’m supposed to live while I search (as I start repaying my student loans, of course). Most interestingly, no mention of how disabled I would have to be to receive any help at all. I’ve known other people on benefits for bad backs … surely blindness, mental illness, and chronic tension pain are equal to a bad back?

I’m not alone. I have spoken to a handful of blind Albertans who claim they were denied as well, even when they appealed. I’m currently in the process of appealing, but my hopes aren’t high. Even the process itself is frustrating. I can’t seem to get hold of anyone. Everything takes an inordinate amount of time to get done, if it gets done. Some dark part of me thinks they make it arduous on purpose, just so you’ll give up and go away.

I won’t go away.

I need this more than they need to be left in peace. I hate to admit it, but it’s true. I was raised to be self-sufficient. Pull yourself up by your own bootstraps, and all. It took me years to admit I might need government help, and to this day I cringe when I think about it. I feel absurdly guilty, even though I know I have the right to a bit of help. Struggling as I have to be approved, I’ve had ample time to doubt. Maybe I’m just grabby? Maybe I’m not trying hard enough to explore alternatives? Maybe employers are more receptive than I think they are? Maybe … maybe …

The facts don’t support my doubts, though. Take a look at this disturbing poll in which employers admit they find hiring blind people frightening; they don’t want to deal with extra expense (sometimes the expense is much lower than they think it will be). Most tellingly, they believe that a disabled person takes more and yields less. A black hole, in other words. Who wants to throw money at a black hole?

Their fears are mostly groundless. There is evidence to suggest that disabled people, once settled with the necessary accommodations, are hard workers and very loyal. We know the value of a job, and for my part, I’d never risk it because I know how precious it is. I’m not naïve enough to search for the perfect job. I don’t need rewarding, not yet. What I need is paying.

So, even with the deck stacked against me in almost every way possible, I’m stuck—at least for now. I will have to hope that, once I graduate, I find employment very quickly. I will need to pay for an apartment, and the living cost in Edmonton is only climbing higher. I will need to begin paying back my student loans. Once my fiance moves here, I may need to support us both for awhile until he can find a job himself. We are both blind, and both qualified to do useful work. We are both, theoretically, in demand. And yet our resumes will find their way into the recycling bins more often than not. Our calls will go unreturned. Hiring managers, initially so excited by our qualifications, will suddenly lose interest without any apparent provocation. They will make feeble excuses, because they can’t legally say, “sorry…you’re blind, so we don’t want to deal with you.”

Eventually, I’ll get lucky. I’ll find a company that is willing to give me a shot. I’ll do well, because I’ve been trained well and because I am grateful for every opportunity. I’ll be okay, eventually. Haven’t I gone on and on about how blind people live full, rich lives?

In the meantime, though, I’ll just have to hope that someone decides I’m disabled enough.