Clients, Not Customers: Charity, Politics, And The CNIB

Author’s note: The following contains frank and potentially controversial material from several sources. To protect their privacy and the privacy of those they have worked with, no names are given. They have not explicitly asked for this, but I wish to shield everyone from unnecessary backlash.

I began this post as an attempt to dispel misconceptions surrounding CNIB, RNIB, and similar organizations. Things took a turn, though, when I received a flood of responses documenting issues people had with the CNIB, in particular. The sheer volume of feedback I received convinced me that I needed to write a post about it. Someone needs to speak up, because at present, blind people have no voice in Canada outside the CNIB, and there’s nothing democratic about that.

If you’re Canadian, you probably believe that the CNIB is the go-to when it comes to virtually anything blindness-related. Some go so far as to believe that blind people spend the bulk of our time there (we do not) and that we could not possibly get on without them (which many of us could). People even believe, as K told me, that the CNIB finds jobs for us (which they certainly do not) and that they essentially look after us in every way (which they definitely don’t). It’s true that they provide many essential services, especially for people who are newly-blind or who are born without sight and need some support. I still require O and M (orientation and mobility) instruction from time to time, and I do love their massive library of braille and talking books. Still, I wouldn’t say that the CNIB is in an ideal state. I also wouldn’t say that the structure and operations of the organization are serving the community as well as they could be.

Let me first say that I do appreciate the CNIB very much. They’ve done a lot for me, personally, and they’ve also done a lot for blind people across Canada. While I worked for them, I met wonderful people. I was treated with dignity and kindness. I was given challenging, rewarding work. I had a great time. But there were darker parts—parts I can’t talk about here for confidentiality reasons. However, other members of the blind community remain unfettered, and they wanted me to tell their side of the story. So, here goes.

I mentioned that the very structure of the CNIB is problematic. As K pointed out, the CNIB’s charitable status forces them to solicit funding in whatever ways they can. This means pulling relentlessly on heartstrings, even if it misleads people; even if it makes blind people seem helpless; even if it portrays us as dependent and in need of hand-holding and coddling. The CNIB puts out astonishingly condescending ads like this one (shoutout to the actors—they’re both great people). Check out this one from the RNIB, which obtains funding by convincing the sighted population that blind people’s lives are dark, gloomy, and hopeless without the RNIB’s intervention. I mean…come on! They even have sad cellos! Who on earth couldn’t give money to an organization that uses sad cellos?
The CNIB, like many charities, is always in a somewhat precarious position, so there is a chronic lack of staff, an inability to pay the staff they do have (including benefits), and ongoing doubt as to where they’ll be next year. I even recall the CNIB making threats about discontinuing their library services if they did not receive more funding. The CNIB has a loud voice all right … but who is speaking?

The CNIB is lobbying, and lobbying hard. I’ve written about their attempts to persuade governments to fund rehabilitation services just as they do for all other disabled people. If you get into a car accident and are paralyzed, you will be given rehabilitation and physiotherapy until you gain as much independence as possible. You are, in theory, supported through the entire process. If you get into an accident and are blinded? They send you home and, if you’re lucky, they point you towards the CNIB. It’s a sad state of affairs, and the CNIB is trying to change that. That’s noble, in itself, but again, we run into the issue of advocacy: the CNIB is not the mouthpiece of the blind; it is the mouthpiece of itself. R goes so far as to state that politics and lobbying are more important to the CNIB than actually helping its own clients.

This brings me to another of K’s excellent points: we are not customers or members of the CNIB, but clients. This puts us in the position of receiving services and being spoken for. We do not advocate; they advocate for us. We do not educate; they educate for us. While there are many blind people employed by CNIB, the organization is not democratically structured so that the general blind community can have a say. We can scream as loud as we please, but at the end of the day, the public will listen to the CNIB before they’ll listen to us. The CNIB has name-recognition and a century of service on its side; who are we to disagree with them? To call them out? To claim that they may not be the perfect solution after all?

Oh, right: we’re charity cases. Every service we receive is given to us for free. It puts us in a disempowering position. Because we don’t pay for what we receive (and most of us couldn’t afford it even if we did want to pay), we are not given a voice. Many would consider me ungrateful if, after receiving a free service, I complained about its quality. Even if I have good ideas, they’re not particularly welcome, and most of the clients I’ve spoken to feel the same sense of futility. We can’t complain, because it’s free. We can’t progress, because it’s charity. We’re stuck. Well and truly stuck. And the front line staff? Those generally dedicated people who take on massive caseloads to help us? They are overworked and underpaid. They are spread too thin or left with little to do. They get to deal with all the discontent, and get none of the reward. In many ways, being a front line staff member at CNIB appears to be a thankless job.

If you’re in a position, like R was, where you receive horrible service from a particular branch of CNIB, you are out of options unless you move. She had difficulty becoming a client, because forms either failed to be sent/received, or mysteriously disappeared altogether. Once she became a client, she had to fight to receive services at all. She left dozens of phone calls. She went up the chain to try to get someone to listen to her. When she did receive service, she claims it was perfunctory and next to useless. When she tried to advocate for herself, she was dismissed. When she tried to take control of her own situation, she was told there was only one right way to do things, and she’d have to suck it up if she wanted help. R had difficulty with an O and M instructor—with whom many other clients had issues—because that instructor seemed to have an agenda of sorts. R knew her own vision and health best, but this instructor seemed to think they knew better than R did. Eventually, R gave up completely and stopped asking the CNIB for help. These days, she teaches herself how to use assistive technology. She relies on help from other blind people which, thankfully, has been forthcoming. While her experiences are certainly unusual, they are not unique. I have heard these stories over and over, and I’ve even had a taste of them myself. While my experiences with the CNIB have been mostly positive, I have occasionally encountered staff members who played favourites, for example. One client had no trouble getting service for something trivial, while another client could not get vital service for love or money. One has to wonder why this is so widespread. Why is it so prevalent and pervasive? And what on earth do we do about it, when we have no say in how the organization is run?

L brings up the unfortunate reputation the CNIB has gained over the years. She says, “I would take a job with the CNIB if I had to, but it is definitely a last resort. I don’t want my name associated with them.” This is partly because sighted people assume that if CNIB employs a blind person, it must be busywork or pity work. Far from it. Blind employees work just as hard as sighted ones, and several hold executive positions. Yet I, too, feel a little squirmy when I tell people where I’ve worked. I just know they’re judging me, and I know it isn’t merited.

So, what’s our grand solution? One would hope that, with such an outpouring of emotion, the blind community would have come up with something. We find ourselves stumped, though. Perhaps we should have a system more like America’s, where governments pay for rehab services, and consumer organizations like the NFB and ACB act as legitimate mouthpieces for blind people. Canada does have one advocacy organization by blind people for blind people, but it’s very low-profile. Many of us had never even heard of it!

The point is, there is no grand solution. The CNIB has so much going for it, but it also has massive issues that could not be fixed without significant restructuring. It relies on public funding, which is capricious and just a little too scarce at times. We do need them, as things stand anyway, but they seem to have forgotten us. Many of us are lucky: adult blind people with solid independent living skills don’t need the CNIB very often, if at all. We are not living lives of darkness and suffering. Yes, there are profound struggles, but there is plenty of light there, too. The question is, can it be better?

We will see what the coming years bring with them. Perhaps governments really will commit to funding rehab services for us, though with substantial cuts to health care, that doesn’t seem likely. Until then, we’ll just have to carry on and hope things get better. It’s bleak, and dismal, and woefully inadequate, but there it is. Still, the blind community is robust, innovative, and spirited. We’ll figure it out. The only question is, when?

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Out of the Frying Pan and Into the Fire

As my Canadian readers may know by now, the CNIB is circulating a petition asking the government of Alberta to take responsibility for its visually impaired citizens in a way it has never yet done. For the last century, the CNIB has shouldered all rehabilitation service for the province’s blind population including orientation and mobility, independent living skills, low-vision assessments, deaf-blind services, etc. On a national scale, the CNIB has also provided library services for all blind Canadians, relieving public libraries of the responsibility of providing accessible materials.

 

For those of you unfamiliar with the CNIB, particularly my American friends, it is a non-profit charity organization, relying on government and public funding to stay afloat. Stay afloat it has, though not without frequent setbacks, downsizing, and restructuring. More than once, the CNIB has hinted that they may have to shut down their library because they could no longer afford to maintain it. For dedicated bookworms like me—particularly for braille-loving bookworms—this is an unwelcome prospect.

 

As of April 2016, Alberta’s CNIB branch will no longer be providing rehabilitation service to Albertans; instead, the organization wishes to encourage and assist the government in taking up the job themselves. I can see the logic: in our current medical system, if you have been paralyzed from the waist down, you are given rehabilitation therapy. You’re not just sent home, pointed towards a charity, and left to your own devices. If you are blind, though, you can be sent home immediately after you have been pronounced healthy, and there isn’t even a legal obligation to point you towards the CNIB. Imagine the shock and devastation of being newly-blinded, only to be dismissed from the health care system with no instruction on how to get around, cook, clean, or even figure out how to organize your own belongings. It’s doable, of course, but many newly-blinded adults (as well as small children who have been blind from birth and are just figuring out the world around them) need the service that CNIB provides. My question is, will we be worse off once the responsibility changes hands? If we go by the current state of the Alberta health care system…there’s a good chance the answer is yes.

 

In theory, it’s a wonderful concept: if the government adopts a similar system to the one in the US (where rehab services are funded and administered by the state, not by charity) there is much less chance that the money will simply run dry one day, leaving everyone stranded. The CNIB can turn its attention and energy to other matters while the government pays for the necessary care of its own citizens—citizens it has gotten away with mostly ignoring for the last 100 years. Instead of relying on relentless fund development campaigns to make sure I receive the services I need, I now only have to present my Alberta Health Care card to be shown a new route, or be assisted with a new work situation.

 

Here’s where the fairytale dissolves, though: the health care system is far from perfect. Even emergency medical care is flawed beyond what I could possibly describe in this post (or any mere blog post, really). You can wait hours and hours at the ER just to receive basic and essential care when you are desperately ill. You can wait months (or even a year or more) to undergo tests and surgeries if your condition is not considered immediately life-threatening. Sure, you can fasttrack and go private, but that sort of defeats the purpose of our wonderful socialist care system, right? Isn’t that the whole point?

 

Things are already pretty bad under the stewardship of the CNIB, at least for many Albertans. I grew up in Northern Alberta, and CNIB specialists were only able to travel to me on a sporadic basis for an hour or two each lesson. Eight hours of driving for them, and only two or three hours of training for me. When I was a child, they were very helpful and supportive of my parents, but once I got older and needed Orientation and Mobility training, they simply didn’t have the resources (human or otherwise) to serve even my most basic needs. I was fourteen before I was taught precisely how to use a cane properly, and about sixteen before I knew how to cross a freaking intersection with any degree of safety! My transition to the city at seventeen was rocky, to say the least.

 

Even when I moved to Edmonton, though, things weren’t a bundle of roses. Currently, there are only two O and M specialists serving the Edmonton area, and one of them does not work with adults at all. Oh yeah, and they are not exclusively tied to the Edmonton area; one of them goes out to Northern Alberta to assist rural clients. So, you have one full-time specialist serving the entire adult blind population of Edmonton. That might sound reasonable enough, but I can tell you that getting O and M service is an absolute nightmare. Unless it’s an urgent school-related situation (they won’t even help you with work, I tried), you could wait months to receive training unless you are ridiculously persistent. There is a triage method of sorts—the most important cases are theoretically dealt with first—but that kind of thing can easily be manipulated. If your situation is less grave than someone else’s, but you are very persistent or persuasive, you might receive service more quickly.

 

Arguably, the impersonal nature of the Alberta Health Care system might help mitigate some of these problems…but I really do think we may be going from bad to worse. For one thing, we already know the triage system is flawed; how much more flawed will it be for rehab services, which are not considered necessary for one’s actual health? Sure, it’s inextricably linked with quality of life, but who has the time or money to worry too much about quality of life, right? Quality of life is for rich people, or at least people with full health benefits. My suspicion—and it’s my personal suspicion, no one else’s—is that we will still be waiting months to receive vital service; we will still be competing with others for priority treatment; we will still struggle to get what we need and may resort to figuring it out ourselves. For many of us, it’s simply easier to get some sighted friend to walk us through a route until we figure it out. It’s slow, and not quite as safe, but many of us are capable of it.

 

So, I will probably be okay. I will probably not feel the lack when the system switches over (if it switches over—do remember that the government has made absolutely no promises). But what about the seniors who suffer from macular degeneration and need help learning how to perform basic tasks all over again at 85? What about the mother of a newly-blinded teenager who has no idea where to turn? What about the parents of that two-year-old they have just realized is blind? Who will support them?

 

This isn’t just about me; this is about everyone who has ever relied on the CNIB for anything at all. They have been such a strong and capable presence for so long that the government has, I think, gotten complacent. I fear for those who will need support in the coming years but will probably not get it. I fear for those who currently hold jobs at the CNIB who may be sent packing—special training and all—when the government decides, as it may, that any person at all can safely do O and M or Independent Living Skills instruction. I fear for the parents, teachers, and employers who may require support and guidance in making accommodations, and will have no one to ask. Maybe I’m wrong: maybe the government will swoop in, save the day, and give us even better service than the CNIB ever could. Maybe. But I’m scared. Really scared. I really do think we’re jumping out of the frying pan…and right into the fire.