Friday, December 16, 2011

The High Cost of Being Disabled

The hotel rooms ranged between $145 and $195 a night, we opt for the cheaper room. The computer tells us that that room rate doesn't have an accessibility option. We try the $155 option, then the $175 option and finally book the $195 option. The computer confirms the selection. I call the hotel. After several minutes of discussion with the front desk clerk who, for some reason doesn't want me to speak to the manager, I get put through. The manager listens to me explain that I find it unfair, if not discriminatory, that disabled people get only one rate option - the highest rate. The manager explains to me that the room is bigger. I explain that I have as much right to 'choice' as does any other customer. After only a moment's tussle, she agrees with me and manually lowers the rate. She tells me that any time I stay there just call through to her or one of the other managers and the rate will be lowered. I hang up.

I am booking seats for Joe and I to go to a live show. I can't book on line because there is a message saying that to book accessible seating customers must call and book over the phone. While waiting on hold, a message tells me to book on line or, if continuing to want to speak to a representative, there will be a $5.50 charge. I wait. When I speak to the representative, I ask right away if I could be served by a manager, the woman asks me why. I tell her that I think it's unfair that I'm given only one option, and then I have to pay for using that option. I want to book on line but am not able to, not because I have a disability, but because the system seemingly can't handle booking accessible seats. The woman agrees and says that she has a disability herself and she hopes I'll write in to complain. I already had and told her that I'd done that. She booked me the seats, didn't charge the surcharge. I hung up.

This happens surprisingly often during the year. Disability just costs more. Take the group that has the highest unemployment rate of all minority groups, has the highest number of people living at poverty level, and charge them more for the same, or even less. Now I know I am fully employed. I know that, if pushed, I can afford these extra charges. But that's not the point. The point is that it shouldn't cost us more to participate - especially since the range of choice, even at the higher rate are limited. That hotel only has four accessible rooms, none are near the elevator, none have an outside view, none are on the ground floor. That theatre has only a few accessible seats, none are up front, all are at the very back of the theatre, none have a straight on view. So more for less, and gratitude is expected.

'But,' you might be thinking 'you didn't pay the higher rate or the service change.' And, I'd agree. But I did have to spend a whack more time and a whack more effort to get the price lowered and the service charge eliminated. I don't want to have to speak to the manager, I don't want to have to 'ask' for something to be removed. I just want to book a room or book a ticket. I'm not even getting into, here, how wondrous it would be to have a range of options - I'm just saying, that when you're disabled it costs. Money or time, or patience, it costs.

The only good thing about all this, is that, in these two recent examples at least, the people who I spoke to understood my complaint and acted on it. There are numerous times that I speak to people who just don't get it. Maybe that, itself is progress, or maybe I was just lucky twice in a row. Who knows? Do you?


Beth said...

I dunno whether you were just lucky. I've yet to encounter accessible rooms at a premium though I haven't seen them at the lowest price, either.

What galls me is that, in my location, disabled license plates are considered to be custom. Like plates with fancy borders where you can choose what they say, you have to pay for disabled plates every year in addition to the yearly fee for standard plates. Oh, but that's ok because they don't cost quite as much as other custom plates, so we're obviously getting them at a discount. Besides, there are reduced fees for those older than 65 that obviously serves the disabled. (I was actually told this when I asked over the phone, as if it was applicable; I was 25 at the time.)
Disabled plates aren't treated like custom plates except in the extra cost. There is no choice whatsoever in the numbering. Every other plate can be renewed in three different ways; disabled plates can only be renewed by one method. But disabled plates are obviously custom, right? I mean, we have the choice to be unable to park close enough to easily go in public places. Disabled plates are a privilege, it seems. State policy. Lovely. Need a lot more than one kind soul to change that.

Anonymous said...

I read your blog frequently and respect about ninety-nine percent of what you say. However, I often wonder what it is that you propose should be done to right all of these wrongs. I'm not being flippant, I really wonder. Do you feel that every facet of life should be acccessible for all people and how might that look? Before I get attacked here, don't think for a moment that I believe you should have to jump through the hoops you do to get what you want. However, I wonder what a fully accessible world looks like. The very nature of some places means they're not for everyone. Now, I know we are nowhere near having accessibility for core things like you've highlighted, but what is the dream? I'll spend my life advocating for fair access for my most favourite person, but given that I'm still accessing the world on two feet, I'm bound not to "get it" sometimes. I once read a newspaper article about a small northern town that had to decide between making their tiny community centre accessible or keeping their food bank open longer. It still makes me think. I've been to communities that have accessible playgrounds, but some residents without running water. Given that I spend a lot of time scouting out accessible playgrounds (fully accessible, not the ones that pretend to be), I treasure them, but it does make me wonder what's fair to demand when resources aren't bountiful.

Keep up the good work, Sir!

Andrea S. said...

I have run into the same problem as a deaf person. There was a musical I wanted to go to with my partner some years ago. The ONLY seats in the theatre from where the sign language interpreter could be seen just happened to be some of the most expensive seats in the theatre. I argued about how this was unfair. The person selling the tickets argued that there was nothing wrong with it because they weren't forcing me to choose those seats, I was still free to choose the cheaper seats. Yes, but the performance would not have been accessible from the cheaper seats! So they essentially WERE limiting my choice.

On another occasion, we went to visit a center where we could learn about island cultures. There were several different tours we could select among: the highest cost option involved having a guide with us. The only way to get a sign interpreter to give me full access to the various lectures, etc., was to pay full price for the highest cost option. Moreover, the only way we could get a vegetarian meal as part of the tour as vegans was to eat in the lower-cost dining hall where there was none of the promised dinner time entertainment that they were offering in the meat-only dining hall. And yet, for this, we were still expected to pay the cost of the most expensive tour option. I tried arguing with them about why this was unfair but lost the argument: we still had to pay high cost for service that really, essentially, turned out to be the equivalent of the lowest cost service.

Under the Americans with Disabilities Act (I've no idea if it is the same under the equivalent laws in other countries that have one), there has been at least one court case here that has found that, if the only accessible option for a particular service is the highest cost option, then disabled customers should only be charged for the lowest price option. They only should be expected to pay the highest cost option if they have a genuine choice -- i.e., if there ARE accessible options that are lower priced that they could have chosen if they wanted. But try explaining that to personnel who don't see why it is discriminatory to force disabled customers to pay top dollar for accessibility to something that is really basically the equivalent of the lowest priced service. It seems that with many businesses, the only way to actually get them to respect the ADA is basically to spend a lot of time energy and expense suing them--so if you don't want to have to go to this extraordinary amount of trouble then you often can't persuade people to treat you fairly or respect the law on their own.

Dave, you got lucky when you were actually able to get two people in a row to see reason. And, it still sucks that you had to specifically request and push for fair treatment in the first place.

sashasmithy said...

@Anonymous, you said "it does make me wonder what's fair to demand when resources aren't bountiful."

I'm not certain what the OP believes, but I personally believe that it is always fair to demand equal access in the world. Disabled people have a right to live life just like non-disabled people and (most of the time) it's not our fault that communities didn't think of us when creating their centers, playgrounds, and food banks. A lot of access issues are simply inconsideration issues rather than huge money issues, but everyone wants to think of it as money because then it seems so much easier to deny access. Also, the cost of accessibility would be a lot less if people implemented it to begin with.

"The very nature of some places means they're not for everyone." I am uncertain what you mean by this. Is there one place in the world in which no disabled person EVER is EVER going to visit, attend, and/or enjoy? I'm coming up blank.

To the author,
I often end up paying the higher cost of everything or just not attending an event altogether if I can't afford the higher cost. I have huge anxiety issues which often cause difficulties in social situations where I need to demand fair treatment.

The times I do bring up fair treatment, people have been pleasant about it, but nothing ever gets done. One of my favorite stores redid their entire parking lot, but did they touch the two ramps that had a gaping hole at the bottom? Nope. A thrift store I could only get into with help said they didn't know why they didn't have a ramp and they would let someone know. Is there a ramp yet? Nope. Not even a temporary makeshift one. And as I live alone, I have no one to help me into thrift stores, so I have to pay for new clothes.

Tamara said...

Once again, I learn something. I didn't realize that access can cost people with disabilities more. Not right, and apparently not legal in the US per Andrea.

@Anonymous - I'm sorry, but I find it very difficult to believe that any community - no matter what the size - has only one choice - to make a community centre accessible or keep their food pantry open or having accessible playgrounds or citizens without running water.

In our community the food bank is run by volunteers. If the community really valued their food pantry, then where are the people who care? Why aren't they volunteering their time?

Andrea S. said...

To anonymous:

To reinforce what Sashasmithy says:

If you plan for accessibility in a new building from the blue print stage onwards, then it often adds LESS THAN ONE PERCENT of the total cost of construction to incorporate features that enable people with disabilities to use the space as easily as everyone else. Some features don't add any more cost at all--as long as they were planned for. It only becomes expensive if you wait until the building has been constructed before going, "Oops, we need to tear out these steps to add a ramp and tear out part of the wall to make the entrance wider."

Very often, people claim that accessibility is expensive when it isn't necessarily true. What actually causes the expense in many cases is a failure to plan ahead for access: many accessibility features are NOT inherently expensive. They only BECOME expensive if you have to tear down the old to incorporate the new.

I'm not saying there aren't time when accessibility can genuinely become expensive. I'm deaf and have sometimes missed important opportunities because the most feasible way to ensure my access--often involving sign language interpreters or CART, etc.--can indeed be expensive. But even here, wise foresight and advance planning could have made it possible for the people responsible to provide communication access without too much of a strain on the budget if they had PLANNED AHEAD for disability inclusion in the first place. This lack of planning on their part is often what really causes their supposed inability to pay for an interpreter they hadn't anticipated being asked for.

Often when people say, "We have to choose between Important Service X and making this place accessible" what they really mean is, "We screwed up, we didn't make immense savings on the costs by planning ahead for accessibility. Now we confront a choice between provding Important Service X or paying the cost of fixing the results of OUR OWN POOR ADVANCE PLANNING."

But of course blaming us disabled folks for wanting to be treated fairly is easier than taking responsibility.

Anonymous said...


I work at a food bank and I find your remark disturbing. I don't think I've ever even once seen a food bank and poverty issues used as an excuse or reason for furthering the oppression of people with disabilities. People with disabilities face enough prejudice without people suggesting that callous disabled people and their demands for a ramp caused starving children to die. I don't know what others think but that kind of thinking is dangerous. Too food banks as well as to disabled people. I can easily hear someone saying, because we gave to food banks we couldn't buy books for our schools.Those damned poor people destroyed education.

Anonymous said...


In addition to the kind of inequities Dave (and some of the commenters here) have shared, there are other things that may not seem obvious at first glance. For example, some poor people save money on housing costs by purchasing a place that is so tiny that there is only barely room to squeeze a bed into the bedroom and only very little space for walking around the bed. But if you use a wheelchair, if you don't have enough space to park your wheelchair by the bed or install a hoist to lift you into the bed (if you cannot transfer yourself), then you can't get into bed. You basically have to have a minimum amount of space in your home in order to navigate your own home at all. If you already have a middle class income then you can afford the space--the main tricky thing is finding an apartment building you can get into, and other standard accessibility features, plus you still have to plan wisely (no excess or poorly placed furniture where it will consume space you need to move). But if you're poor, those extra few feet you need just to get your wheelchair into the bedroom may be beyond your fiscal reach.

Here's another example: Deaf people need special equipment to use the phone on an equal basis. In the US, we are "lucky" that the Americans with Disability Act includes a whole section on phone access. Among other things, this means deaf people can receive a specially designed video phone for free (this phone is all video with no audio--if you can't hear but can speak, you can use a regular phone line in conjunction with the video to speak while the other person signs back to you).

BUT. You still have to purchase a TV screen to use with the phone (they recommend a 15 inch HDTV). You can hook it to the TV you also use for watching television, but that means it can take so long to switch from TV mode (or to turn on the TV if not in use) to phone mode that the person calling might have hung up. So it's more efficient if you are able to dedicate a TV screen just to be used with the phone, then leave it on all the time.

Also: you need to pay for your own access to very high speed internet access. Some deaf people might have purchased that anyway. But I know at least one deaf person who cannot afford internet at high enough speeds to use effectively with a video phone.

No matter how you dice it, phone access for deaf people inherently costs more. And not all of that difference in cost is covered in other ways.

CL said...

I think the point that disabled people often don't have the same range of choices, and that it ends up costing them more, is a very good one.

In Chicago we're having a debate about disabled parking at meters. Currently, people with a disability placard can park for free at meters, and the company that owns the meters just sent the city a huge bill for lost revenue due to disabled parking -- leading many people to demand an end to free parking for people with disabilities.

At first, I thought of free parking for disabled people as a way to ensure that nobody is limited by their inability to access the pay box. And that's one benefit. But then I realized that if everyone had to pay the same amount, it would cost disabled people more because they have to park right in front of stores. I have the option of parking a couple of blocks away in free residential parking (and frequently do this) while disabled drivers don't -- meaning they would have to pay more than the rest of us because of their need to park close.

Anonymous said...

Dear Dave,

even though the message of your post ist absolutly true it mad kind of sad.

After some of your posts about what you need for accesibility I tried to figure out how an ideal accesible world needed to be for me.

That is not easy because my problem is mostly tiredness, being slow and having pain if I work to hard. And in older posts we were talking about "disability-bonus" for instance getting a tax-repay or being able to park in certain spaces.

I am still working and can pay may bills and some extras inspite of my disability. And in cinemas or in mueseums I pay less and I can use public transport for very little money. But and here is the but: I am often to tired to go somewhere after I worked, I am exhausted and work only parttime not because I wont, but because I can not work more.

Sometimes I am to tired to argue about my needs. Sometimes I am plain delusionated.

And than people either can not understand or simply pity me. And the pity-factor is the worst. It makes me feel kind of inapt.

Yesterday I left the train on my way home and forgot my handbag in the train. With everything it medication, money and all. Thankfully the police I called was able to help. My handbag was turned in to the local police-station. Minus the bills but with everything else still in credit card, passport, medical history, mobile and my Nitro-Spray.

Pity-Factor or sheer luck? I dont know?

All I know that disability costs me a lot of energy and needs a lot of arguing and coping strategys in an exhausted body.

Sorry, if this does not make sense but I am so exhausted. I will now stay at home for a three week holiday.


Anonymous said...

I guess in synopsis what I wanted to say was: Disability mostly costs energy and needs up enery via self-control (pain and resource control) and self-advocay.

It is tyring and sometimes feels very sad.


Andrea S. said...


You raise an interesting point, so I want to be sure I have correctly absorbed the message you are trying to convey.

How I interpret it is:

This conversation started with Dave saying that people with disabilities often end up needing to pay more than others to receive what may be lower quality services, product, etc. And some others chimed in with more examples.

But if I understand you correctly, you are saying we not only need to pay more in dollars. Many people with disabilities also need to "pay" more (or invest more) in terms of physical energy and stamina.

I agree with this. I do not have a fatigue-related condition so I don't have the physical problems of stamina that you have. But when I need to keep pushing for inclusion in all kinds of contexts where my inclusion ought to be a given (but isn't), then this can be very draining even for me, albeit more in the sense of "psychological energy" if that makes sense. Needing to advocate for your needs over and over can have such an enormous impact that often I feel psychologically worn out (or maybe "burn out" would be more accurate?) even before I've begun taking any steps to advocate for myself.

When you take all of this, and then add in a condition where you experience the fatigue in a much more literal, physical fashion, I imagine that must compound the "energy suck" effects several times over, at multiple figurative and also literal ways. And when you don't have much energy to begin with (being "energy poor" instead of, or in addition to, being "money poor"), the impact of all this is disproportionately worse.

I have sometimes seen dialogues in other disability blogs around the concept of "second shift for the sick" where enormous amounts of time have to be invested just to keep track of all the many medical appointments and prescriptions and take care of the many glitches that can emerge (for example, alerting the doctor or pharmacy or insurance company that they made a mistake that needs to be fixed so you can care for your health). For people who have only a few minor issues, these are minor inconveniences. But the more medical things you need to take care of, the more all the related chores increases (trips to the pharmacy, phone calls to the insurance company or doctor's office, etc.), to the point where it is almost like a full time job in itself ... and because you're sick you have less energy to deal with all this to begin with.

I think many of us people with disabilities (whether involving pain and fatigue or not) also have a "second shift for the disabled" where we need to expend more time and energy than others (as well as more money) just to advocate for equal treatment and access to the same services that everyone else is already receiving. So if you need to deal with all the medical insurance stuff AND all the self advocacy stuff AND deal with being sick and taking care of yourself ... this is almost the equivalent in some ways of having three full time jobs to deal with.

Hope this made sense and that I was on target for some of what you were thinking of, Julia. Thank you for sharing your thoughts on this, I welcomed the opportunity to do some pondering.

Anonymous said...

Dear Andrea S.,

thank you for taking the time to answer to my comment. You are quite right in how you interprated it.

It was not only the money thing, or the lack of joices that touched me in Daves post. It was the explaining part that made me so sad. Because sometimes even though I am able to talk up for myself and about my needs I am simply to tired.

And yes, keeping my body healthy takes half of my spare time in a week...

Thank you Andrea

Dave Hingsburger said...

Julia and Andrea: You are right the price we pay in energy outways the cost we pay in dollars. I am so often now just to tired to fight and end up not only fatiqued but also disappointed in myself.

Katie said...

I had an argument with the manager of the theater in Keswick once because he insisted that the men I was supporting needed to pay for their seat and mine- doubling the cost of seeing a movie just because they needed some support. This man honestly did not understand what I meant when I asked him if people with wheelchairs or hearing aids or seeing eye dogs had to pay double as well, and when I explained that when I'm working I am essentially the same as any of those support devices. He was adamant that if we were going to be in the building we needed to be paid for because we were people. I tried so hard to explain it, but some people just don't get it at all.

I no longer go there. All my business goes to the slightly-further-away Newmarket theater, which allows support workers in for free.

Bread and roses said...

Andrea S, I have wondered about providing access for the deaf since I had two deaf women approach the nonprofit I was involved with wanting to participate. I had no idea what would be involved with enabling their participation (basically just in meetings where people were talking) and called up some interpretation services to learn that it would be a minimum of $400 per meeting to provide interpretation services. This was because you have to have two interpreters to give each other respite, and there's a minimum to have anyone out. I understand that sign language interpreting is a highly trained skill that people should be adequately compensated for. And I really wanted to say "yes, we'd love to have you and we will make ourselves accessible". But this little (not-well-run) nonprofit had an annual budget of $1000- there was just no way. I am still embarrassed about that. And I thought "there should be a service- something"- basically I think it's unfair to expect disabled people to pay for the cost of accommodations. But it's also unworkable- and I think in some cases unfair- to ask every business and organization that might have a need to shoulder the full cost, either, when it's a huge cost. I guess what I'm dreaming of is an "accommodation fund" that little nonprofits, village foodbanks, cooperative pre-schools, etc. could apply to to help them provide accommodation of the sort (like sign-language interpretation) that comes up occasionally and isn't built into buildings.

Andrea S. said...

To Bread and Roses:

I absolutely agree that there ought to be some kind of community fund to be shared by all organizations, businesses etc. whose budget is small enough that they would genuinely find it difficult to afford these costs on their own. For places like yours whose budget is basically microscopic, the cost to join could be either nothing or something token like a dollar ... for a somewhat larger organizational budget, their fee could be maybe 1-3% of their budget to join. Perhaps there could also be a certain amount of government support as well.

There does also still need to be more advance consideration of these kinds of costs. Maybe not so much for an org with $1000 annual budget! But certainly for organizations with budgets in the five-digit range and up. For example, some non-profits try to claim they cannot hire interpreters because none of the foundations will give funding specifically for that kind of cost. HOWEVER, many funders DO agree to include "disability accommodation" as a LINE ITEM in an overall project fund (say, you are applying to get $50,000 to implement some sort of community project, then when you break down the budget you include $1000 of this as a line item for "disability accommodation"). Then in the budget narrative section, the organization can explain that their target population includes people who happen to have disabilities, whose disability needs to be accommodated so that they can participate fully and not be left behind by the project (WHO and the World Bank came out recently with a publication saying 15% of the world population are people with disabilities, and this cuts across all genders, countries, cultures, etc. ... the proportion is higher of course if your population is mostly elderly compared to if you're working with children, but it's still fairly safe to assume that basically a segment of any population group is going to include at least some people with disabilities who may need some form of accommodation be it interpreting or Braille transcription.) Of course this would require providing statistics--if local statistics cannot be found, then if nothing else you could cite the recent WHO/World Bank's world report on disability. But many organizations for some reason don't think of disability accommodation as being legitimately an integral part of their overall project budgets in the same way as hiring requisite staff for the project, or purchasing equipment needed for it, etc. And so they don't even consider the idea of integrating it into their proposed budget for a project they are raising funds for. And for some reason, even some of the same funders who may approve disability accommodation if an organization they fund initiates that discussion, still don't seem to ASK other applicant organizations why their project proposal doesn't discuss how they will be inclusive of people with disabilities in their target population.

Another approach: an organization that already has a strong network of volunteers involved with it could specifically inquire among its volunteer base (or among members willing to consider volunteering) to see if any of them are professional, certified interpreters who would be willing to occasionally interpret on a volunteer basis.

Another thought: perhaps organizations like yours could start approaching other organizations in a similar situation to see if you can find a way to create your own communal fund for disability accommodations. Maybe if enough of you could get together ... ?