Out-of-touch and proud of it

In response to our recent survey on Constitueny Office accessibility, we received a response so breathtakingly condescending and ignorant that it deserves special attention.  People with disabilities are used to patronizing attitudes, but not from government officials.  This person is a Constituency Assistant, paid by the people he or she she disparages.  And this person should be fired, but you will not learn their name here.

His or her remarks in blue, my response in red.

It was good to chat with you and I wish you the best on your project for the Society.

While our office is quite willing to participate. Based on what you recorded it does not put things in perspective and misleads.

- Gravel parking area with no designated wheelchair parking spots

Wheel chair movement in the area at the office-front is easy. It is not loose gravel but more of a packed“crusher-dust”. We have been here for almost 7 years and it is a non issue. Therefore I will state there is plenty of wheelchair parking in front of our door.   Your statement above does not describe the area accurately when it comes to designated parking spots or condition of the base in front of our office. You lead people to believe that this is a negative to those with impairment. It is not. 

Parking

Wheelchairs are not good on gravel, mostly for lack of traction, and even worse on crusher dust, mostly for its tendency to turn soupy in inclement weather.  Asphalt or cement pavement is really the only satisfactory solution for reliable traction and for the purpose of staying relatively clean.  People who are attending a business meeting have a reasonable expectation of cleanliness, and I expect your MLA might be unenthusiastic about shaking my chalky, clay covered hand.  When I return home, my partner is always after me about tracking in residue from my daily appointments, and common courtesy would mandate that your dirt not mess up my clean house.  

Most wheelchair users require some sort of extra wide parking to deploy a ramp or at least to position their wheelchair next to an open door.  This is why 'van accessible' spaces have room for a regular car and those diagonally striped areas beside, often leading directly to a curb cut.  These areas are not for the convenience of motorcyclists, although you might be excused for thinking so based on casual observation.  If you do not have designated accessible spaces, of course spaces near your office door would be occupied first by people whose need is less. 

Businesses with extensive gravel lots sometimes just pave a few spaces and designate them as accessible.

You conclude your section on parking by saying "You lead people to believe that this is a negative to those with impairment. It is not"  Let me be perfectly clear.  No one here is impaired.  Banish that word from your vocabulary.  We are talking about ways for citizens, taxpayers and voters to interact with the government that is elected to represent them.  Please keep your prejudices to yourself.

- No automatic door operator on the front door
 
Our automatic door is a human being.  It is the best solution of all and does not increase the carbon footprint. Our front-desk is  three-t0-five feet from the door and great visibility of the door and parking area.  You make the lack of an automatic door a negative. It is not…nor would an automatic door improve accessibility. So…yes we have an automatic door because we are always there to open it!

The Door Button

After 20 years of wheelchair use I have become pretty adept at doors, even heavy ones.  Getting through a tricky door is like dekeing a goalie - a complicated maneuver with multiple feedbacks.  As you say, you have a polite person at your front desk who will unfailingly leap to open the door.  Perhaps your human is better at this than most and always at their post.  Yet people with disabilities value their autonomy as much as anyone else and prefer to participate without having to ask for help.  

That aside, the button is a symbol, a bit of advertising that a person using a wheelchair (or pushing a stroller, or carrying a package) is welcome.  Low-power door openers use 2 amps, which at 120 volts is 240 watts.  To reduce your carbon footprint, you might choose to work in the dark, but it seems unkind to begrudge a few seconds use of the equivalent of four 60-watt bulbs.  Your neighbourhood supermarket has even more elaborate automatic doorways on their premises, and they know how to make customers feel welcome.  Are constituents customers, or merely carbon dioxide generating inconveniences?
-
 Level entrance into the office

It is not perfect but one of the best in this Town.  Several occupants of wheelchairs have had no issue with the entrance.

Level Entrance

We credited you with a level entrance.  I see from Google Street view that your office has a half door.  Your receptionist would need to be vigilant indeed to see my 48" person above the bottom of the window.  There is a post located very inconveniently for wheelchair passage.  The geometry of wheelchairs dictates that obstacles, even small ones, be taken at right angles.  They simply will not go over a threshold at an angle, where one caster is up and one is down.  So a person using your door would need to position themselves orthogonally, allowing for a little momentum to get over what appears to be a small lip.  That would require a minimum 36" straight shot.

- A washroom that wouldn't be considered wheelchair accessible

Yes this is true. However we have done our best to acquire this leased space in the town and paraplegics have been able to use it despite the size.

Washroom

Is it a civil right to be able to pee while at a meeting with your MLA, or just a courtesy?  Either way, it can be a matter of urgency.  For most wheelchair users, the issue is safety.  Those grab bars aren't just spiffy towel racks and the 17" toilet isn't just taller for show.  Using properly placed grab bars, an adept person can make the transfer unassisted.  A wheel under sink allows a person to wash hands soon to be used in shaking with their MLA or CA. Hygiene is the expectation.

I have the option to sue you when I fall in your inadequate washroom, and I would expect to win a settlement that would make you pay attention.  The larger issue, of course, is employment discrimination.  Have you ever had a wheelchair user apply for a job?  Perhaps you might if you had modern facilities.  Another lawsuit I would surely win.  

PUBLIC TRANSIT QUESTION

... your question does not apply in our rural setting as there are no public transit routes period.

Public Transit

For the reasons you state, we do not factor availability of public transit into the final score.  It is simply for the information of readers.
   
If you are using the info I gave you in the manner of your previous email, it does not apply and does reflect the reality. Therefore unless you provide more detail I do not think we want to participate in your survey.

Conclusion

I can only imagine the irritations that come with operating a rural constituency office. Perhaps we hit you on a bad day. Whatever the reason, your response was both condescending and ill-informed. That citizens who use wheelchairs can not access, let alone work in, the offices of their elected members on an equal basis with other Nova Scotians is a disgrace, especially when the opportunities to improve this deplorable situation are inexpensive, easy, well documented, and require only a little will.  Frankly, I am baffled that you defend the indefensible.  When the alternative is to perpetuate barriers or to remove them, it seems to me that there is only one choice.

For now, I am inclined to say that our score for your office - 1 out of 6 - is generous.

Gus Reed
The James McGregor Stewart Society

Air Canada

I'll tell you in advance that this is a story with a happy ending.

Lynne and I planned a trip to Victoria, BC this summer  and we started with the Great Canadian idea of going by train. As we learned more about the cars and facilities it got to be pretty daunting.  The roomettes aren't accessible, although my 26.5" wheelchair could probably fit through the door.  To make a long story bearable, the prospect of being a prisoner in a moving room for several days just didn't seem worth it, even if a companion travels free.

So we decided to fly, thinking anything can be tolerated for a few hours.  I became aware of Air Canada's caregiver policy when I asked about getting seating near the front of the plane and boarding by aisle chair.  I was urged to complete a Fitness for Travel Form which would alert Air Canada to my needs and allow a caregiver to travel almost free (caregivers pay the tax on the fare).

I was dubious.  The idea of sharing details of my medical history in order to board a plane runs counter to my nature.  On the other hand, the form says the caregiver is to physically assist in the event of an emergency evacuation, which goes directly to a basic problem with flying - namely getting out!

Anyway, we gave it a shot. I was pleasantly surprised at every turn.  Getting on an aisle chair is usually an exercise in manhandling.  At Air Canada, the person needing the chair is in charge, so employees unfailingly ask for instructions.  They are courteous, good humored, patient and capable.  No one patronized.  They talk to you, not your caregiver.  We boarded seamlessly in Halifax, stayed on the plane in Toronto, made a tight connection to a small propjet in Vancouver (a spiffy portable ramp, used gratefully by everyone on board).  My wheelchair was waiting at the door,  All the airports were nicely accessible.

Returning, we encountered a couple of misaligned jetways, making extra work for the aisle chair crew, but only a small inconvenience.

In short, Air Canada gets it.  They seem to have a very good communication system.  They know you're coming, the aisle chair is at the gate, the team is quick to get you on and off, there is an aisle chair on board.  This beats many US airlines, where access is an entitlement, but the aisle chair is often on the other side of the airport.

Air Canada is the exception.  Their example should be followed everywhere, but until it becomes a matter of legislation, it won't be.  Just try to get your wheelchair into the new Chickenburger on Queen Street.........

So go forth and multiply your travels!

Gus  Reed

.  

A Canadian Disability Endowment

This should not be taken as authoritative tax advice.  Please consult a professional.

Fitzgerald: The rich are different than you and me.
Hemingway: Yes, they have more money.

Being disabled in Canada really sucks.  Accessibility is a very distant dream. Governments have excuses but no standards. The medical profession wants to cure you but not improve the quality of your life.  Charter rights are a vague promise.  By educational attainment, employment and income measures disabled folk lag  well behind.

But there is exciting news.  Canadians who meet the guidelines for a disability tax credit (itself a very generous program) are also eligible to have a Registered Disability Savings Plan, which can be funded through contributions, matching grants and outright government gifts.

The terms are extremely generous.  By saving as little as $500 each year (there is no real minimum), matching grants and gifts will total an additional $2500 or more.  With the power of compound interest, a modest 5% annual return produces $100,000 in 20 years.

To get full forgiveness of the government contributions, you need to wait 10 years after their last contribution before withdrawing.

Timed like a retirement plan, the money could be withdrawn starting at age 60 and ending at 83.  With modest 5% growth, total payments will exceed $311,000.  Not bad for a $15,000 investment!.  The rules are complex and include an option for accelerated end-of-life payout.  The grants and bonds generate taxable distributions, but distributions are excluded from calculating many means-tested government benefits.  Read the information sheet from Canada Revenue to understand the details for your situation.

RDSP distributions do not count as income for the purposes of the Guaranteed Income Supplement.  The GIS is itself not taxable.  

So a person with zero income at age 65 gets an Old Age Security payment of $15,208.92 nontaxable OAS+GIS.  Our hypothetical saver would then get $7,000 to $21,000 from their RDSP, depending on the year, making for a maximum tax liability in Nova Scotia of just $2700 on a total income of as much as $36000.  This is easily covered by the $7239 disability tax credit, making zero tax.  In Nova Scotia, $30,000 tax-free is roughly the same as $37,000 taxable income.

What's this about?  Wealth.  The median Canadian family unit has about $69,000 in financial assets.  The RDSP potentially puts disabled folks on an equal footing with their fellow citizens.   Call me an optimist, but if word gets out, merchants will be installing ramps to attract your business, banks will see you as a preferred customer, restaurants will have Braille menus, extended care facilities will pay attention to their clients.

Most importantly, disabled folks will be assets, not liabilities.

We call on advocacy groups, educational institutions at all levels and financial institutions to encourage full use of RDSPs from the earliest opportunity.  Hemingway had it right.

Gus Reed

PDF version

How charities work against the disabled

In the wake of recent revelations about Canadian charities, here is a reminder that the exploitation of disabled people for the purpose of lucrative fundraising is not new.  Ben Mattlin, who is the moderator of a disabilities SIG I belong to, wrote this terrific letter about the Jerry Lewis Telethon.  2010 was the final appearance of Jerry.  This letter is 20 years old.  So little has changed, yet there are glimmers of hope.

The letter appeared in the Los Angeles Times on September 1, 1991, on page 3

PERSONAL PERSPECTIVE An Open Letter to Jerry Lewis: The Disabled Need Dignity, Not Pity
by Ben Mattlin

Dear Jerry Lewis:

I was born with a muscular-dystrophy-related disease, and your Labor Day telethons have always turned my stomach. I actually appeared on one in the late 1960s, as the Muscular Dystrophy Assn. poster child for the New York metropolitan area.

Now I am 28, a Harvard graduate, a self-employed writer, married, still in a wheelchair. I can finally formulate what I felt as a child: Despite your undoubtedly honorable intentions, you are sadly misinformed about disabilities. Moreover, you are misleading the able-bodied population while offending the rest of us.

You and your organization have done much good, to be sure, and I myself have benefited from your financial resources. But people with disabilities do not need or want to be characterized as objects of pity. Last year's Americans With Disabilities Act mandates our equal participation in society, including employment. What we need is to stress competence-not outmoded notions of charity.

Speaking of "the dystrophic child's plight," or calling disability a "curse" reinforces the offensive stereotype that we are victims. Wheelchairs are not "steel imprisonment," nor are we who use them "confined" or "bound"; they are liberating aluminum and vinyl vehicles. Similarly, phrases like "dealt a bad hand" and "got in the wrong line" are unfair. Disability is not "bad" or "wrong."

Other examples abound: Being dressed or fed by others is a hassle, but not an "indignity." There is no shame in needing others, no loss of dignity. Our needs are more personal and continuing than other people's-nothing to be ashamed of.

Saying that they are is to say our lives are somehow inferior. Is this how you feel? You have said our lives are "half"-we must learn to "do things halfway," be good at being "half a person." Even slaves in the Old South counted for three-fifths of a person.

Perhaps more disturbing is your use of the archaic word "cripple." While some of us have recently taken it on as a kind of hip slang among ourselves or for political purposes-much like the gay-rights group Queer Nation-this does not mean you should.

Worse still may be your ubiquitous "Jerry's Kids"-never more absurd than when followed by "of all ages." Yes, a lot of MDA's clients (not necessarily "patients") are kids, but do you know how hard it is to become, and be treated as, a self-respecting disabled adult in this society? You may argue it is a term of affection, but you wouldn't refer to your late friend Sammy Davis Jr. as your "boy."

What's really surprising are your inaccuracies. Your tales of disabled kids being taunted by other kids, for example, do not ring true. Most able-bodied kids whom I knew growing up couldn't wait to push my chair. They would even compete to be "chief wheeler."

You further allege that wheelchairs don't fit under restaurant tables, when for years they have come with "desk armrests." And what's this about their not going through metal detectors at airports? Big deal-they're metal! They go around them and are searched separately.

At times, you seem to understand. You talk about our right to live with dignity. What that means is access to schools and jobs, equipment like computers and vans, attendants and respect. The MDA can't be responsible for all this. But misleading people-potential employers, potential spouses, and even newly disabled people who don't know any better-only works against these goals.

When I was about 6 years old, I was in a full-page magazine ad for the MDA: big blue eyes peeking through blond curls. The caption read, "If I grow up, I want to be a fireman." I didn't want to be a fireman, and knew then my diagnosis called for a normal life expectancy. Confused, I decided that I wasn't really one of "them" and denied a part of my identity, my connection to the only community where I could learn to feel good about my disability. I didn't know the word "exploitation" yet.

I realize pity works-last year's telethon raised more money than ever before. And I know some folks think you're a saint. But I also know there were protests at last year's telethon-and will be more-asking why it has taken so long to find a cure and demanding a financial accounting.

Perhaps people would not be so upset if the association spoke less about finding a cure and did more to improve our lives as they are. I know MDA does buy wheelchairs and such. But what does it do to make our world more accessible and to promote employment? How many people with disabilities are employed by the organization and its corporate sponsors?

Don't get me wrong. Muscular dystrophy can be a killer, and we mourn our brothers and sisters who have died. Yet, despite the impression that one may get watching the telethon, we are not all terminal. And even if you whip MD, you will not end disability. It is here to stay; so are we.

Why not, this year, present active, well-adjusted disabled people-not superheroes but normal people-who nonetheless have used or could use financial assistance to achieve their goals of independent living?

The harm being done is considerable. A dynamic, young, educated, professional woman I know, who grew up with a disability similar to mine, says she cannot watch your telethon because it makes her want to kill herself. "Is that what people think of us?" she asks.

Your pity campaign is so dispiriting, so destructive, that no matter how many millions you raise, the ends do not justify the means. Why not wield your sizable influence to fight our real enemies? What truly handicaps us most are the obstacles-architectural, financial and attitudinal-erected by others.

(Copyright, The Times Mirror Company; Los Angeles Times 1991All Rights reserved)