Dr. Stephen Hawking and Ableism – How the Passing of a Genius Opened a Floodgate of Well-meaning but Poorly Worded Tributes

 

ABLEISM – defined as discrimination in favour of so called typically abled people , it is discrimination and social prejudice against people with disabilities. Ableism characterizes persons as defined by their disabilities and inferior to the non-disabled

My disability bullshit meter is today at Defcon One.

Oh what a week it has been. Actress Gal Gadot started it off with a well meaning but awful tribute to Stephen Hawking by tweeting the following.

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This was followed up by many tweets by the disability community explaining to Gadot that her words were unacceptable.

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This in turn brought out the self-righteous and sanctimonious on twitter who defended Gadot but also by suggestion Ableism is simply ones self being sensitive and/or being too politically correct

Nothing could be further from the truth.

Some well known advocate/activists had to shut down their feed for the day due to the outrageous push back on social media.

Hawking was diagnosed with amyotrophic lateral sclerosis at the age of 21, a motor neuron disease that eventually required him to use a wheelchair . Several disability rights activists used twitter and other forms of social media to explain why Gadot’s comments were so problematic noting that disabilities shouldn’t be viewed as life inhibiting circumstances that people will be freed of upon death.

However, as the days went on it got worse, with comments on social media from Hollywood, star athletes and other celebrities posting comments such  as “trapped in his body but his mind was free”, “his genius almost normalizes his disability”, “a genius despite his disability” .

Even main stream media took the bait and acted poorly with one British tabloid having perhaps the most shocking front page headline of all managing to get every piece of ableism possible into one headline.

To be clear, Dr. Hawking’s wheelchair provided him with freedom. The chair WAS his freedom. His disability was, of course, part of who he was but it did not define him.

Millions of wheelchair users around the world saw these headlines and comments on social media and, without question, their hearts sank as they saw and felt, once again, that they are relegated to a sub-section of humankind, not worthy and a crushing assault on their confidence and self worth. Imagine being told that the only way they could be free was to die.

If you don’t get it, you’re privileged. If anyone in the non-disabled community disagrees with ableism, they are privileged.

People with disabilities are not “confined” to wheelchairs, they are not “bound” to wheelchairs, they just happen to have a disability that requires them to be a wheelchair user. The wheelchair is totally liberating.

For the same reason I am not hearing impaired, I am deaf. The only time I am impaired is after seven beers.

Ableism, now you know.

Godspeed Dr. Hawking and let’s hope there isn’t only a stairway to heaven.

Be DIRECT, be DARING,  be BOLD.

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To Disclose or Not to Disclose

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A question I am asked quite often from the disability community is “should I disclose my disability” and if so, when is it best to do so?

It is important to disclose at some part of the onboarding journey otherwise the employer may not realize that any difficulty one might have with a particular task when related to a disability. With 70% of disabilities being non-visible, most employers will not know that a new hire may be disabled.

It is also important to know how to disclose. One must be an expert on their disability and own it. See it as a benefit to who they are, show that they see the world in a different way and can complete tasks with a different approach; often better than someone without a disability.

Studies show that self-identifying early in the hiring process leads to a lack of continuation in the game. Stating a disability on a cover letter or on a resume is simply a red flag for the recruiter who has not met with the candidate yet and sees little by way of contribution. The recruiter most often is buying into age-old stereotypes, myths and misperceptions. A French study in 2014 showed that self-identifying in the first interview gave the candidate a 7% chance of a second interview. According to caseinterview.com the average percentage of candidates with no known disability who get a second interview is at least twice that number and often higher.

Therefore early disclosure leads to poor outcomes.

Those who have obvious disabilities have no choice other than to discuss their disability at the beginning of the process and this is where it is important to know how to disclose. First, the candidate should do their homework and study the company they are applying at. Do they have a track record of inclusion?  Are they known to be an accessible business? Do they market to the disability community? Is their advertising inclusive and so on? When in the interview it is important to discuss this. Secondly a candidate must go to the interview armed with all the positive statistics that make up the business case for hiring a worker who has a disability: likely to have higher productivity, stay longer (5 times longer) , work in a more safe manner, lower absenteeism, greater innovative thinking and much more. All candidates have to sell themselves in a job interview but those with disabilities have that added responsibility to sell the benefits of hiring them over someone who does not have a disability.

Is that fair? No, but when done properly it can be rather empowering. The recruiter can learn a lot in a 20-minute interview.

What must be avoided is a conversation about what the candidate cannot do. A recruiter who is new to inclusion doesn’t know what they don’t know so may ask questions in a negative view. It is up to the candidate to turn this around, perhaps responding with a piece of data such as “did you know absenteeism for workers with disabilities is 85% lower than workers without”

So where do I suggest a candidate self identify and disclose? As late as possible and preferably once an offer of employment has been made

Be direct. Be daring. Be bold.

Why the Word “Disability” Matters

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People First Language is described by Wikipedia as ‘a type of linguistic description in English to avoid perceived and subconscious dehumanizations when discussing people with disabilities’. It is now an accepted type of disability etiquette.

Person First Language has become the norm.  Instead of saying “disabled person”, the supposed correct lexicon is “person with a disability”. Instead of “deaf guy”, it’s a “man with a hearing disability”.

Problem is, that’s all bullshit.

Person First Language was created by those who do not have disabilities. It was created by workers in the disability field, employees of agencies, and indeed, moms and dads who thought it would be a better way to describe their children’s disability. As a result however they removed a vitally important piece of that individuals psyche. It also made that individual less. It reduced the individuals true identity.

Few of us with disabilities actually identify only as disabled. We are doctors, lawyers, retail workers, politicians and more. However we have a disability and although the disability doesn’t define us it does define an important part of who we are.

Person First Language morphed into something even more insidious. Changing the word “disability” into a myriad of cringe-worthy descriptions. “Differently abled” and my personal favourite, “handi-capable”. These descriptions serve one purpose, to help the non-disabled individual feel better about themselves while talking about those with disabilities

The word “disabled” isn’t a negative description. It is in fact an extremely important word that allows a disabled person to own their disability, it creates confidence and is damn empowering.

Those with disabilities often lack confidence and self esteem. That’s natural. However we make this worse and devalue that individuals worth by changing how we describe them. We also risk the fact that labels stick. Describing someone as handi-capable diminishes that Individuals worth and value to a very low level. You can’t own it and feel empowered when someone describes you with that term. You can’t be seen as a contributor to society with that descriptive terminology.

Person First Language is also responsible for some disability groups needless journey into bizarre descriptive terms within their own disability group. For example, in the deaf community (I am prepared for some backlash here) we have big “D” deaf, small “d” deaf, “oral deaf” , “late deafened” “hard of hearing ” and more.

There is nothing inherently wrong with those descriptions on the condition that the individuals align themselves with it. I find the term “hard of hearing ” ridiculous.  Terry Fox wasn’t hard of walking. He was disabled and he damn well owned it.

I identify as deaf but many in the deaf community argue with me that I am hard of hearing. This is where the problem lies. It’s their insecurity around wording, not mine. I can’t hear shit, I’m deaf plain and simple.

The time has come to take back what is rightfully ours, the word disabled. We identify as we see fit and those who prefer People First Language should carry on. Those without disabilities need to respect an individual’s decision on how they wish to be identified.

For me, I’m deaf and I am disabled. Feels mighty empowering

Say the word and say it loud

Be direct, be daring and be BOLD.

Increased Employment Statistics for People with Disabilities

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The numbers are in for 2016 and it’s good news. More Americans with disabilities are working today than at any time in the past.

Canadian participation rates are increasing too but we do not yet have statistical ratings currently used by the US government. We should have one, but a ranking system would jolt those Provinces who lag behind to do more around inclusion.

Anecdotally however we know more Canadians with disabilities are at work in real jobs for real pay compared to only two years ago. The attitudes of many employers have changed. Some large corporations such as TD Bank, RBC, Sodexo, Loblaws and others see inclusion as part of their cultural strategy. This is what we have been preaching for years and the results show evidence of a shift in thinking.

SMB’s are also jumping on the inclusion bandwagon. Some “get it” and see the obvious economic benefits while others see the disability community as a huge untapped labour force in areas where few workers exist. There are many such areas across Canada where labour shortages are dire.

There are, however, too many top brands in Canada who are either still in the infancy stage of Inclusion or it’s not on their radar at all. Some of those names would surprise you, as every Canadian knows them. It is difficult to imagine that in 2018 this would be the case.  Those companies are in trouble; brand culture that isn’t inclusive is a cultural journey to oblivion. Those brands will cease to exist unless they embrace real inclusion.  Some may scoff at such a comment but let me be clear, any corporation not embracing inclusion of people with disabilities in real jobs for real pay, not including workers with disabilities in management and executive roles and failing to include individuals with disabilities on board of director positions will struggle to remain competitive and for some, will fail completely.

While we wait for the Federal Accessibility Act, Ontario continues down its path of creating one good piece of legislation that helps people with disabilities only to enact another piece of legislation that does the exact opposite. Perhaps that’s a lack of communication or it’s a case of pandering for votes, I will leave that up to you to decide.

Meanwhile the US is reporting remarkable numbers. I have been hard on the US government for a long time now so I am happy to provide props where props are due. The employment gap in the US is narrowing (dis/non dis employment) meaning some States are becoming more inclusive.

340,000 more Americans with disabilities found work in 2016. That’s up from 87,000 in 2015. This is transformational change. Companies like JP Morgan Chase, Pepsi, SAP, EY, UPS, IBM, Starbucks and Walgreens lead the way in various forms with Walgreens of course being the clear champion of inclusion world wide. Others are coming along such as Microsoft, Cisco and McDonalds, slowly at the moment but gathering momentum.

States and Provinces can’t make jobs appear but each jurisdiction is responsible for ensuring that employment for workers with disabilities is made easier by removing systemic barriers most often found within government itself.

North Dakota once again leads the way with 54% of its citizens of working age with disabilities, in the workforce. Once again however West Virginia is last with only 27.4% of its people with disabilities working.  Overall the employment gap is 35% vs 77% for non-disabled. Still awful but better that previous years.

Rounding out the top ten States with employment at over 40% for the disability community is South Dakota, Minnesota, Alaska, Nebraska, Wyoming, Utah, Iowa and Kansas.

Much of this change has come about because of the hard work of organizations such as Employment first and school to work transitional programs. These programs of transition and training are seeing a 78% success rate in landing real jobs for real pay. There are now 300 such programs in 46 States.

Although this is transformational, there are still intersectional gaps that the US has to address such as race. African Americans with disabilities have a much lower employment rate at only 27% and Hispanics also are lower than average. Canada faces its own intersectional issue, our indigenous people with disabilities have employment prospects much lower than the norm.

See the report for yourself and see where your State ranked. If you are at the top, well done and keep pushing. If your State has work to do, be DIRECT, DARING and BOLD.

Inclusion in The Sunshine State

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Miami, Florida has more car washes than most other States. There are numerous variations, from coin-operated, full-service and even those with restaurants and entertainment. But one full-service car wash stands out in this competitive landscape, Rising Tide Car Wash in Margate, a suburb of Miami.

Rising Tide has two locations. What makes this business different to all other car washes in the State is that owner and co-founder Tom D’eri decided from day one in 2012 to be a fully inclusive employer. Rising Tides two locations employ 50-60 workers, of those about 40 are on the Autism spectrum.

I recently had the chance to visit with Tom and his crew at one of their locations while on a visit to Miami. Apart from the fact that Rising Tide is probably the cleanest and brightest car wash I have seen, the enthusiasm of the workers, their desire to be perfectionists and their productivity was obvious without having to look at data or sales/transaction scores. Customers love coming back to Rising Tide. They know their pride and joy will be cleaned one way only, with perfection. Apart from that, more than half of those customers are directly effected by disability, they either have one or they have a loved one at home with a disability. In Canada that number is 53%. This, along with an excellent product is what brings Rising Tides customers back again and again.

The average customer service index for a car wash in Florida is typically at 68%. Anything over that means the business is exceeding standards. At Rising Tide, that number is 91%. Once again, proof that there are clear economic benefits from being inclusive.

Although, Tom is well aware of the economic benefits of inclusion. Lower turnover, higher productivity, safer workforce and more. His passion is based more on how inclusion shapes the skills of his non-disabled workers. He simply has a better management team. This is a response I hear often from companies that have built capacity with workers who have a disability. Tom’s managers and non-disabled workers have become better people managers; they see employer engagement through a completely different lens than they might have in the past.

My visit to Rising Tide coincided with the tragic school shooting two days earlier only blocks from the car wash. Four of Tom’s workers were in that school and escaped without harm but some of their classmates didn’t. These workers would not take time off and insisted on working their shift despite the very recent events. This shows once again how incredibly important work is to people with disabilities, including those who are very challenged. Work should always be expected as young people grow up, mom and dad work and so do older siblings so the discussion has to be focused on the fact that the child with disabilities will work also.

Tom does have some concerns with State and Federal laws and policies that financially hurt pwd’s as they come off of benefits and gain meaningful and competitively paid salaries. Apparently the clawbacks and excess income tax is an issue in Florida as much as it is in all Canadian Provinces. Bill C-395 will challenge the Provinces on this as I mentioned in my last blog posting.

When you are in the Miami area, visit Rising Tide and say hello to Tom and his fantastic team. It will make your day and your car will shine like it did when you first bought it.

Here is a short video on Rising Tide.

While in Miami I decided to pay a visit to a different initiative. This one is “Piece of Cake Bakers”, a training program operated by Robin Matusow a native Miamian. Robin created this program for students graduating from high school who have disabilities and no marketable skills. Typically Florida school boards do not provide hands on training for any sort of skills during high school for students with cognitive disabilities. This means there is a hard stop upon graduation. This is not a Florida only problem. We have similar issues at home.

This program is designed to enable students to gain basic industry skills. Students participate in employment skills training and vocational counseling. Most importantly, there is a focus on work related behaviours which is missing In The school system both in Florida and in Canada.

What makes Piece of Cake different to other training programs is that Robin has partnered with the department of education in Miami-Dade County to ensure graduates of the bakers training program receive a diploma from the department of education that lists the skills this individual has attained. This is far more powerful to an employer than a certificate from a local training program.

Here is a video from Piece of Cake

While speaking of Florida and the awful events at Marjory Stoneman Douglas

high school , it’s important for all of us to understand that mental illness and Autism is NOT the cause of or a contributing factor to the shooting epidemic in the United States. Not only has President Trump insisted that this is a mental health epidemic, the shooters lawyers have blamed the shooting on Autism. This is a complete disgrace because report after report has shown that neither condition is ever a causal ingredient to mass shootings.

The problem is and only is the prevalence of guns and ammunition, the culture of believing the second amendment is sacrosanct and an irrational fear that everyone is in imminent danger.

The answer to the problem is gun control and not a further increase in the stigma of mental health or further alienating those with Autism. The problem with addressing this issue rests with Americas political leaders including the President of the United Stares.

President Trump however received over $30m in campaign donations from the NRA.

That’s the problem right there. Real, courageous leadership vs bought leadership.

 

 

 

Audism – What it’s Like Being Deaf in a Hearing World

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What is Audism?  What is it like being deaf in a hearing world?

Audism is based on the attitude that one is somehow of more value based on their ability to hear. Audism is where a Hearing person feels that life as a deaf person is not valued, is futile or miserable. Audism is having a negative stigma towards anyone who does not hear.

In other words , Audism is discrimination against the deaf

Internalized attitudes toward the deaf that are systemic are known as Dysconscious Audism.

So how are these systemic barriers to inclusion practiced in a hearing world? Society as a whole is guilty in some way, shape or form. As a deaf person myself I face Audism all day long. Audism is practiced by business, government, retailers, public sector workers, banks, in fact Audism is practiced by just about everyone at some point in time

Let me explain.

In the morning I turn on the news. The newsfeed is captioned by an automatic system perhaps Google. Google captures at best, 60% of the spoken word. The fact the newsfeed feels that’s ok is audism. Imagine if hearing people only heard 60% of what was said on that broadcast, the station would be vilified.

Next I start my car to go to work and it’s not cooperating. I have to call road-side assistance. Since I can’t use a phone I have two choices. Look up the email address for roadside assistance or text my message using the road-side assistance number. That text bounces back because their system doesn’t accept text. That’s ok, I will check for an email. Nope, no email. That’s Audism

Then I have to discuss an overcharge on a bill I received for a toll highway. No email address, no text , only a phone number. So I have to get someone else to call. Operator says only the cars owner can call. When notified that the car owner is deaf, the only solution provided is that I drive 75km’s on said toll highway and visit their office. That’s audism

But not all is lost. It’s time for my first meeting of the day at a coffee shop. We both order but the cashier has questions and I can’t understand her. I mention that I am deaf so the cashier then speaks only to my friend. That’s Audism.

At the airport (an airport as big, busy and new as Pearson) announcements are oral, there’s no visual announcements, that’s Audism.

My boarding pass states I am deaf. The cheery gate clerk pages me to make sure I am at the gate. That’s Audism.

During the safety briefing the flight attendant hands me a Braille safety sheet. That’s Audism (not Air Canada, those guys are brilliant)

During the flight the flight attendant asks me if I will be ok with the two choices for dinner. Yes of course why wouldn’t I? I ask. She replies “you have special needs.” That’s Audism.

We finally land and I get my rental car. Attendant is quite concerned that a deaf guy has chosen a powerful sports car and suggests something more demure, that’s audism

At the hotel I have another meeting, this time with a number of people, Having difficulty following the conversation I ask the person next to me what was said. They reply with one or two words leaving me with task of understanding the entire conversation based on two words. That’s Audism

Audism, it’s tiring as heck

Inclusion, be direct, be daring, be bold.

It’s Time To Be Direct . Daring . Bold

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Mark Wafer introducing The Opportunities Act – Ottawa, February 5, 2018. 

Welcome to the Inclusion Revolution.

At a time when we are at the threshold of change in the disability world it is imperative that those of us in the advocacy and activism sector push hard. Change is coming in many forms, transportation, housing, education, travel, research and more. Some, of course, with better outcomes than others but the needle is moving in the right direction.

Largely ignored in the past, North America and European countries have enacted policy and legislation directly targeted at the disability community.  Not all of this is working as intended or even helping at all but overall our governments are recognizing that the disability community is a massive, educated, connected force to be reckoned with. Campaigns are under way to change societal attitudes, the gap between so called “us and them” is narrowing ( a term only non disabled people use) but the one area where there is still much work to do is in employment for people with disabilities. Employment being the single most important aspect of any individuals life. With a paycheque one lives a full life, one gets to contribute and one has meaning and purpose in life. It’s about dignity.

Yes, we are well ahead of ten years ago but the statistics show that despite all legislative , National, International and grassroots initiatives the participation rates for people with disabilities in the workplace have not changed in 40 years. It’s difficult to imagine that the same percentage of North Americans with disabilities were working in 1970 as there are today.

As I have said for years the reason for low participation rates is directly related to the attitude of employers. Employers buy into every stereotype imaginable simply as a result of fear of the unknown. Despite the fact more than half of citizens in developed nations are directly affected by disability, these age old stereotypes still exist. These barriers to inclusion in real jobs for real pay are attitudinal. Attitude therefore being the greatest barrier a person with a disability faces when trying to get into the workforce.

The statistics are troubling. StatsCan indicates that 54% of Canadians with disabilities are not working however this data doesn’t include anyone without marketplace attachment. Today there are over 500,000 Canadian graduates from the past five years with disabilities who have never worked a single day. Of those,  270,000 have a post secondary education. Without working at least one day, these individuals are not included in official statistics therefore the real unemployment number, anecdotally is closer to 70%. Comparing this to figures released during the Great Depression, Canada had a 24% unemployment rate in 1933, the peak of the depression. At 70% unemployment today Canadians with disabilities live a perpetual depression.

The challenge for us in the advocacy world is to break down these attitudinal barriers in the private sector. When we changed the narrative about 15 years ago from focusing on the individual to focusing on how a business benefits from inclusion we started to get traction. Today this is the only approach that works. In the past the approach to business was based on legislative compliance and/or a level of altruism. Any agency using that approach today will have zero success.

There is however one other huge challenge. System barriers that have being created over the past decades by our governments, particularly our Provincial governments in Canada. I am referring here to policies that are designed to punish a worker with a disability by taxing them at a higher income tax rate than a non disabled worker doing the exact same job in the same company. It’s hard to imagine that this is the case but it is true for every single Canadian Province. For the most part these are unintended consequences of poor policy or updates and amendments to existing policy without looking at potential road blocks and traps in the system.

There are two main issues. The first is that a person with a disability, receiving income supports from his/her Province has those benefits clawed back when they finally enter the workforce. They bravely rise above the fear of losing that security safety net and beat all odds to land a job, any job and most likely not the one they are educated for. Quite rightly once they begin to earn a regular salary the employment benefits should end but the policies of our Provinces clawback the benefits so dramatically that the worker can be worst off than when they were unemployed. This is especially so for Alberta.

Secondly , a worker ending their history with employment supports would typically require some continued attachment to the system, perhaps in the area of health benefits if the employer doesn’t provide them or if the employers health benefits are inferior to those provided by the Government. Due to this attachment, a worker with a disability could now have an income tax rate higher than a millionaire. This is unfair and draconian yet every Province is guilty of participating in these practices.

There is more. Foolish and absent minded policy can also ruin the employment of those who have exceptional needs or requirements of Government services. My favourite example being a man who a few years ago was working in my business as head of logistics. He worked with us for 11 years and was without question my best employee. He has two significant disabilities one of which required daily medication. In 2013 the Ontario Government approved a new drug that had an increased effectiveness for that condition. The drug cost $5,000 per month and our benefits package would not cover it. The Government did indeed cover the cost but on one condition. My best employee had to resign, go back on Income supports, relinquish his role as a tax payer and become a burden to the system.

As we see more and more employers stepping up and coming forward, realizing that the disability community is a massive untapped labour pool, we can’t lose sight of the fact system wide barriers exist across the country. For that reason I am proud to announce that along with MP Pierre Poilievre, our Shadow cabinet Finance Critic we have launched the Opportunities Act.

This act , when legislated will provide guidance and expectations to the Provinces in the area of taxation and clawbacks. Over a five year period the goal will be even and fair taxation and a fairer clawback of employment benefits. No longer will Canadians with disabilities have to fear that if they finally get a job that they will be financially worse off. Hard work will be rewarded just as it is for workers without disabilities.

The Act was tabled yesterday in the House of Commons and will receive its first reading in March. In all Provinces, social service spending is paid for by the Federal Government through Federal/Provincial transfer payments. Although it is never the intention of the Federal Government to micromanage Provincial government regulations, the Federal  Government  can and should set guidelines and expected outcomes as well as where necessary , call out poor behaviour and poor rules and regulations that hurt Canadians with disabilities.

Yes change is coming and it is up to all of us to keep pushing. The conversations are now mainstream, it’s time to be direct, daring and Bold.

– Mark Wafer