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A Reckoning: 2018 and the next 100 years #Disability #Equality

Today I am giving a friend a platform. Since he no longer has a blog, and I do, I am sharing this here.

***

Today, I’m so angry, I can’t concentrate on my labs. This morning when I checked my email here is what I read:

“With sight loss, everything you have ever known becomes unfamiliar. Your favourite T.V. chair, your reading nook, your computer desk: all become symbols of the quality of life you feel vision loss has robbed you of.

When you donate to CNIB, you help give that quality of life back. You help people learn new ways to enjoy their favourite movie. To read a book. To connect with loved ones.

Friend, your donation today can give families back their life.”

This has been eating away at me for a while now, but I am finally sick of it and I have to say something.

My friends, everything in the quote above is an absolute lie. If you were to dress up as a beggar on weekends and hit people up for money even though you have a good job, it would be no different from what is happening here.

“With sight loss, everything you have ever known becomes unfamiliar.”

Wrong! In fact, just the opposite is usually true. In my experience serving hundreds of people over the years, I have found that familiar things take on special significance and offer tremendous comfort to the newly blind.

This email says that newly blind people resent familiar things, that those become unfamiliar, mocking, threatening, icons of a supposed life we have lost. Get that monkey off your heart strings for a minute and try and think about this logically.

If you undergo a major life change, no matter what that is, wouldn’t you rather be in your familiar home surrounded by your possessions?

This email says that sight robs people of their life, but that isn’t true at all.

I have seen this countless times for myself. A newly blind person is not going to deny themselves their morning coffee just because they went blind. No, they are going to fiddle and futs and do what comes naturally until they get their coffee. They may not be confident of making coffee at a family member’s house, but they aren’t going to go without at home. In fact, something as simple as fixing coffee for a guest can be an outstanding source of pride and self-confidence for someone. There are always variations in situations, experiences, and coping mechanisms, but generally speaking, people take pride and comfort from being surrounded by familiar things.

Losing sight requires a person to develop new skills and use new tools, but it doesn’t rob most people of their life.

Only a very small percentage of us actually commit suicide because of losing sight. Many of us are turned away from daily activities because of the fears, low expectations and preferences of the sighted.

“don’t pour that coffee! It’s hot! you’ll burn yourself.”

We can damage some one’s fragile outlook by so denigrating something they take pride in. The newly blind person pours coffee for himself every day when the sighted person isn’t there, but it’s too much for the sighted person to watch. Thus, something the blind person worked hard to accomplish and may have been looking forward to sharing with the sighted person is diminished because of the low expectation of the sighted person.

Low expectations are the damaging factor here, not blindness.

Promotions like this one add insult to injury by demeaning the actual bereavement process people go through because of something like vision loss. As much as people learn, adapt, and go on to lead full lives, being blind in a world designed by and for the sighted is not without it’s sense of loss, of being singled out in a negative way.

We get through it, not because of money, but because of family and peer support, and the tenacity of the human spirit.

Playing on the natural grieving process of the newly blind to tragify us and scare you into giving money is an insult.

According to
Charity Intelligence
there are an estimated 500,000 blind Canadians, and CNIB provides approximately 560,000 hours of service delivery across canada each year. You can do the math in your head.

That’s just over one service hour per blind Canadian.

The annual budget of CNIB is just under $30,000,000 per year

– 54 cents of every dollar goes to programs.

The top ten earners at CNIB earn approximately $2,000,000 per year collectively, with the president earning $350,000 per year.

I believe this aspect of the pay structure is not reflective of the income experience of most blind Canadians, and I choose to be insulted that this one person makes so much money from the blind while the actual state of the blind continues to be abysmal and expectations continue to be oppressively low.

Can we do better? I think we can.

Is CNIB the answer? Maybe at one time they provided real value, but in my view that value is at an end.

How can the blind achieve dignity, respect, inclusion, equality, and increased quality of life if people who haven’t experienced blindness believe life ends with blindness?

If blindness is an irrevocable, life shattering tragedy, why will a human resources person want to hire someone who is blind?

How can we convince people to design all things inclusively, …that including every one in design benefits every one?

How can we convince people to rent us places to live, include us in social orders other than those specifically for the blind, or let us raise our own children in freedom?

If blind people are viewed as perpetually broken, how will we ever have our ideas, accomplishments, and opinions respected?

How can we lie to people and beg for money and expect to teach those same people that blindness is not hopeless, …that blind people are successful in their own right and deserve equal participation in society?

Please be angry. It is time. As long as we channel that anger properly, it can be a source of passion and determination blind people can use to build a future for ourselves where-in we are included as equals, not tagging along as third class citizens.

It would mean more to me as a blind person, if you would take the money you would have donated to CNIB, buy yourself some beer and pizza, and spend an hour or two a month coming to CFB meetings where we can work together to find sustainable ways of delivering needed services that don’t require us to lie, grovle, and debase ourselves to get the crumbs left over from sighted executives.

The blind community is not made up of deficient and damaged people. We have creators, innovators, educators, technology, legal, medical, and financial professionals, and thousands of hard working talented people who can be successful in their own right with real support, tools, reduced societal barriers, and sustainable services.

The blind community has society, culture, political agendas, philosophies, all intertwined with, having things in common with, connected to but not completely the same as those of the sighted or any other social political group.

Let’s build our own movement large enough to provide a valid alternative the state we have now that sells us at a premium, yet far short of our true abilities.

***

Here is my take!

I was born with vision loss (blind) and so was my brother. We grew up with the CNIB who sent us braille/audio books and where we learned how to properly use a white cane to get around safely.

The CNIB is the organization most people would name if asked, have heard of here in Canada, mostly because it has been around the longest. It is celebrating its 100th birthday next year, but things aren’t the same as they were back in 1918 and that can reflect how things are, here and now in this moment.

I don’t want to just be angry either, to demand without being willing to listen, but I do think there has been a reckoning.

We are all individuals of course and I don’t dare speak for all people with sight loss by any measure. This is only one woman’s opinion, mine, and my friend’s reaction to the status quo.

From what I’ve seen and experienced lately though, the disability community, as a whole, are declaring the intention for more equality and rights. I know some of it rests on our shoulders, and that’s why I believe it is time I used my abilities and talents to make life better for the next one hundred years and beyond.

I do wonder who wrote that bit for the newsletter though.

There are only a few weeks left in 2017, but this next year of 2018 is when I plan on becoming more active, both with the American Foundation and Canadian Federation of the Blind.

American Foundation for the Blind

We need to make more changes and to do that, we need to use our collective voice.

Canadian Federation of the Blind

Signed,

Chair and Secretary of the newly formed Ontario chapter of the CFB

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