Listening to a band or hosting a tea party makes therapy more fun

Photos and interview by Louise Kinross

Carling Robertson (right) is an occupational therapist assistant at Holland Bloorview. She works with children with brain injury and youth preparing for employment. After doing an undergraduate degree in kinesiology, Carling changed course and began working for a trucking company. “I remember the exact moment when I said I can’t do this anymore,” she says. “I had spent months coordinating a huge delivery of hospital beds, and someone forgot to close the back of a 53-foot trailer. One of the beds in a crate fell off, and was super damaged. That broke the camel’s back.” Carling is a dancer and her cousin Deanna was hired recently as a registered practical nurse on the brain injury unit. This is how a client described Carling: "You made my heart so happy. Thank you for always being there for me...through this dark time...With so many other kids to help, you will probably forget me, but I will never forget you!"

BLOOM: How did you get into this field?

Carling Robertson: My degree in kinesiology was a huge factor in wanting to get back into healthcare. I started to research rehab programs because I wanted to make a difference. I figured working with people during one of the most stressful and difficult times in their lives would allow me to do that. It appealed to me because I didn’t want my work to feel like a job, I wanted it to be my purpose. I did the two-year program at Humber, and my second placement was at Holland Bloorview.

BLOOM: What is a typical day like here?

Carling Robertson: Three days a week I’m doing therapy with children who have acquired brain injury. The other two days I work with our youth employment programs helping to coordinate placements, job coach and facilitate community outings.

BLOOM: What’s the greatest joy?

Carling Robertson: It’s the progression that you see in clients, and each child learning different things about themselves. With therapy, we’re working toward specific goals, so it’s seeing them achieve those goals. With youth employment, it’s having participants realize they may like doing a job that they’d never thought about. Or seeing them learn how to write a resume, ask for specific accommodations in an interview, or disclose their disability. No matter where I’m working, joy is being able to be a part of someone’s growth and their journey.

BLOOM: What is the greatest challenge?

Carling Robertson: When I first started, it was the compassion fatigue. I didn’t realize it would hit me so hard.

BLOOM: I imagine it would be particularly hard working with children with acquired disabilities, and their families.

Carling Robertson: I found myself leaving the building, and unable to shut off thinking about clients I’d just seen or others I’d be seeing soon. I’d throw myself into imagining what they were feeling, or what their family was feeling. I would go down a rabbit hole, and then I’d be completely exhausted, and feel like the weight of the world was on my shoulders.

BLOOM: How did you learn to manage that?

Carling Robertson: I have extremely supportive teams in both areas. I was able to talk to them and ask: ‘How have you been able to do this for 20 or 30 years and not burn out?’

They told me this happens when you begin to work in this world. They said you need to know you’re doing everything you can, and the families are getting all of the resources we have to provide. To be there as a support is really important, but if you’re not there completely, they’re not going to benefit from it. It was the old airline analogy about putting on your own oxygen mask first.

BLOOM: So how do you personally do that?

Carling Robertson: I had to teach myself that when I leave the building, I shut it off, and I don’t think about it till I’m back in the building the next day. If I can’t shut it off, I’ll talk to the OT I’m working with, and we’ll talk through it. It’s hard to explain this to people who aren’t in health care, so I’m super grateful to have supportive teams.

BLOOM: Do you do anything physical to manage stress?

Carling Robertson: I’m a dancer and I love to dance if I can. It’s a physical [way] to get out all of the stress, confusion and anxiety that comes up on a daily basis. It helps me get it out of my body.

BLOOM: What have you learned from families?

Carling Robertson: I’ve learned that families are incredibly resilient, and that every family is different. Every family has their own process, and every family copes differently. I’ve learned not to take things personally, because families are in such a difficult situation.

BLOOM: Acquired brain injury must have been a huge learning curve.

Carling Robertson: There’s only so much you can learn from a textbook. In school, everything is presented in kind of a cookie-cutter way—these are the symptoms that are typically present. But when you come here, you realize every client is so different, even though they may have experienced the same type of injury.

You need to learn skills to adapt what you do based on the client. Two clients might have the same goals, but the way they get there will be different. Some of the kids are only motivated by Peppa Pig or Paw Patrol, while for others it’s their favourite band. Learning how to incorporate what they love into therapy makes it so much more meaningful. One of my favourite parts of the job is thinking outside the box.

BLOOM: What are the most important qualities for someone in your job?

Carling Robertson: Patience is number one and empathy for sure. You have to be flexible and adaptable, because no two days are the same. One of the great things about Holland Bloorview is that I’m given latitude to be creative and to come up with new ideas. For example, one of my young clients asked if I could go to a tea party at her house. So we’re going to do it here, instead. You need a willingness to learn. If you think you know everything, that’s detrimental. You also need a willingness to accept constructive feedback from colleagues and families.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Carling Robertson: I think the gaps in programs and resources for specific age groups. I’d love one long, continuous road map of resources from birth, all the way to employment.

BLOOM: You have a tattoo on your arm. What does it say?

Carling Robertson: It says curiouser and curiouser. It’s the only quote I could remember from Alice in Wonderland. It makes me think of someone observing something that’s a bit different, and wanting to learn more about it, to get to the bottom of it. It’s about thinking more critically. I knew that being curious would be a constant in my life. I’m super curious getting to know each client, and finding out how they tick, and what I can include in therapy that will make just that little bit of a difference.

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Green acres is the place for me

By Louise Kinross

In 2014, Maya Wechsler and Greg Masucci made a drastic life change. They moved from a row house off a busy street in Washington, D.C. to a fixer-upper house on 24 acres in Bluemont, Va. They were tired of fighting for a good education for their son Max, now 10, who has autism, and wanted a simpler, safer life for Max and his sister Delilah. It wasn’t part of the initial plan, but since making the move they launched a non-profit called A Farm Less Ordinary, which hires about a dozen adults with intellectual disabilities to grow, harvest and sell organic vegetables and herbs. They hope to expand into producing jams, pickles and pesto. Maya and her husband Greg still work full-time jobs. BLOOM interviewed Maya to learn how the family swings its busy schedule.

BLOOM: I understand your husband was a realtor?

Maya Wechsler: He still is. He’s at a closing right now. I still work too. I telecommute with PricewaterhouseCoopers as a proposal manager.

BLOOM: You both work full-time, in addition to running the farm?

Maya Wechsler: We do work around the clock, but we have a farm manager this year, which makes life a little more livable. She schedules the employees and about 20 volunteers.

BLOOM: Can you describe your son Max?

Maya Wechsler: Max is non-verbal, with autism. He’s always looking for sensory input and needs to be running around outside. He needs full-time care and we have someone to do that while we’re working. The farm is for people like him, but I’m not sure if Max will ever be able to work here. I don’t think he has the attention to detail to be harvesting lettuces.

BLOOM: What does he love?

Maya Wechsler: He loves jumping, screaming, going for walks and hikes in the Blue Ridge Mountain. He loves our animals and we’re thinking of increasing the number of animals we have. He loves music videos and listening to Harry Potter. He’s home-schooled, but not by us.

BLOOM: What was life like when you lived in the city?

Maya Wechsler: We were fighting non-stop with the public school system. We were fighting to get a private placement for Max. A lot of bad things happened, which I’m not going to talk about. We were going to have to fight again to get more funding, and we couldn’t take it anymore. That’s why we decided to move out here.

BLOOM: How did you figure out when your son was so young that you wanted to make such a big life change? I have an adult son who could benefit greatly from your program, but I haven’t done anything so drastic.

Maya Wechsler: When we moved to the country, having a non-profit farm wasn’t part of the plan. We just wanted to get out of the city and away from the traffic and fighting with the school. Then when we got here, we thought what a waste of the land. I have a comfortable history of teaching myself stuff—I taught myself photography and ran a photography business. We had always been doing advocacy for people beyond our son, and were politically active, and we didn’t really feel right about giving all of that up. There are so many teens and adults with intellectual disabilities who have a lot of time on their hands and a desperate desire to work.

BLOOM: How does the farm work?

Maya Wechsler: We grow vegetables and herbs and are working on fruit. We’ve planted some blueberry and strawberry and raspberry plants and our goal is to move to value-added foods like jams and pickles and pesto. We’ll always grow veggies and we have a membership program where we deliver harvest once a week in crop boxes. We also have a contract with a food bank. Today we’re harvesting for a big delivery of fresh produce for low-income people. We also do a farmer’s market and a lot of fundraising, and hope to get more grants.

BLOOM: How many employees do you have?

Maya Wechsler: Twelve. They have intellectual or developmental disabilities or mild mental illness, such as anxiety and obsessive compulsive disorder. We’re not equipped for people with physical disability. Some people can drive themselves here, some people get rides, and one person comes from a group home with his job coach.

BLOOM: Is the work seasonal now?

Maya Wechsler: We operate from mid-March to the end of October. We’re trying to raise money for a true greenhouse so we can grow through the winter and have people come all winter. We have the employees, if we can just get the funding. We run six days a week—Monday through Saturday. When they’re not working here, our growers have nothing to do all day long. They sit around, watch TV and get bored.

BLOOM: What do they get paid?

Maya Wechsler: They start at minimum wage and that progresses, with initiative, up a dollar during the season. If they come back next season they get another dollar raise.

BLOOM: What has been the greatest challenge?

Maya Wechsler: Doing it all while parenting and working day jobs. Your energy really takes a hit. First of all we’re exhausted at the end of the day, but we also have back aches and knee problems, so we’re trying to build this up while we still have the stamina, and then hand it off to someone to manage.

BLOOM: How does it compare to the life you had in the city?

Maya Wechsler: As a family I’d say it’s busier than what we aimed for. But it’s also satisfying because there’s a cycle to the seasons that is pleasant. We literally slow down during the winter, according to the grain cycle. It’s also very satisfying because the kids can be outside freely—we don’t have to worry about them being kidnapped or hit by a bus.

BLOOM: How has it changed you?

Maya Wechsler: I’ve become more self-reliant. These country skills that we scoff at as a city person, you realize how valuable they are. We’ve learned to do a whole lot ourselves—from fixing tractors to canning fruit.

BLOOM: I was surprised that you both work and manage the farm.

Maya Wechsler: Autism costs a lot of money. There’s a lot of therapy, and we can’t afford to home school ourselves. Greg and I don’t even get paid from the farm yet. For anyone considering running a farm like this, at least one person has to work off the farm, especially in the United States, due to our health care system.

This is a fabulous Upworthy video about the family.

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Amy Wright, founder of Bitty and Beau's, is CNN's hero of 2017

Two of Amy Wright's children have Down syndrome— Beau, 12, and Bitty, 7.

In 2016, Amy opened Bitty and Beau's Coffee Shop in Wilmington, North Carolina. Knowing that most adults with intellectual disabilities don't have jobs, she wanted to show what people with the same disabilities as her kids could contribute. The shop now employs 40 staff with disabilities like Down syndrome, autism and cerebral palsy (watch Matt's story in the video above). The shop's tagline: More than a cup of coffee, is followed by messages like 'Changing the way people value other people.' The shop was so successful that a second location is opening in Charleston, South Carolina. All proceeds go to Able To Work USA.

Amy was named 2017 CNN Hero of the Year for her advocacy. The award is determined by online voters who chose Wright among the top 10 CNN Heroes finalists.

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Tim Rose and Magnet make the job search easier

By Louise Kinross

Holland Bloorview has partnered with Magnet, an online employment platform, to bring together job-seekers with disabilities and employers.

“Job seekers register and employers build a profile and post a job, and the system uses advanced matching technology to match that job to candidates based on experience, education and qualifications,” says Tim Rose, diversity project lead at Magnet. “If LinkedIn and match.com had a baby, it would be Magnet.” The system was developed at Ryerson University.

Today Tim met with about 15 youth with disabilities at Holland Bloorview to help them build their Magnet profiles.

“When an employer first sees a profile, they don’t see any demographic information,” Tim says. “It’s anonymized to eliminate a lot of early-stage hiring bias.”

Tim says that high school students with disabilities don’t have the same opportunities as peers to do part-time work. “Most of the jobs in that age bracket are very physical jobs,” says Tim, who has cerebral palsy. “This is what I faced. I can’t work at Starbucks or McDonald’s, so I had to look very hard to find a student job I could do physically.” Today, the rise of social media is opening up communications jobs that may be perfect for young adults who are savvy with Facebook and Twitter.

But it’s still a tough slog for young people with disabilities, he says.

“There’s a huge amount of stigma around disability and people still assume in 2017 that disability means employees who have to take more sick days and have more challenges. A lot of employers are reluctant, particularly when it comes to taking on youth who are unproven.”

Employers who do want to hire people with disabilities may not know where to find them, Tim says. “We want to change that by providing employers with a pool of highly qualified talent.”

Tim has personal experience with how challenging the job search is when disability is part of the picture. “I graduated from university with a master’s degree in human rights law,” he explains. “I was personable, outgoing and I had a whole resume of volunteer experiences. I’d started a charity right out of university and even with all of that, and with my ability to articulate well, it took me over four years to land a full-time career job.”

Tim said it was the hardest time of his life. “When you apply to something in the range of 90 to 100 jobs and you get 90 to 100 ‘no thank yous,’ it’s hard to take. I started to question what my value was as a person with a disability and I questioned whether I would ever find something.”

During this time Tim did part-time work as a research assistant and started a business called Disability Positive Consulting. “I wanted to demonstrate the asset of disability,” he says. “I firmly believe that my disability has made me a better person. It’s made me a better communicator, more adaptable, more creative. I built a business around that idea and did a lot of speaking gigs to organizations and government about this perspective. “

It was through consulting work with Ryerson that Tim learned about Magnet and landed his current position.

He has lots of advice for other young people with disabilities.

“Number one is don’t give up,” he says. “If I hadn’t had an incredibly supportive family who kept telling me not to give up, I would have, and I wouldn’t have made it. The other thing I firmly believe is that disability is an asset and you need to figure out what you’re good at and passionate about and go out there and network to connect to the types of jobs you want to be in eventually. Also, it’s okay to be frustrated. It’s okay to get annoyed at the employment situation. You shouldn’t be expected to plaster a smile on your face 24/7 when things aren’t going well.”

Teens aged 16 and up can visit Magnet (hollandbloorview.magnet.today) to start their work profiles. The system is free for job-seekers and employers.

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What do you say about your disability in a work interview?

By Jessica Geboers

I got my first paid writing gig with this very publication in March 2015. I had finished classes and was visiting my grandparents in California. When I got the email, I couldn’t wait to call home to tell dad that someone was going to pay me to write. I knew that he worried about me finding work.

That’s not to say that I wasn’t worried, but it’s different knowing your parents are concerned about your future. With a college diploma and university degree—both in journalism—I didn’t want to disappoint my parents after spending so much time and money in school.

I graduated from Ryerson University with a Bachelor of Journalism on June 7, 2015 and I’ve been looking for work ever since.

That’s not to say that I haven’t been writing. I’ve been writing and published pretty regularly over the past year on the topic of disability. I’m using my talent and love for writing to spread awareness on what I know best. It’s the dream. But I’m not sure I have the makings to be the kind of freelance writer who can juggle enough work to pay the bills.

So I’ve been on the hunt for a day job—full- or part-time. It’s a tough job market for anyone right now, especially recent grads. Gone are the days when a college diploma or university degree guaranteed our parents a job for life. 

That’s difficult when people are this educated. It's even more challenging when I have to consider my physical and learning disabilities. Unlike a lot of people my age, I can’t really work retail or as a waitress or any other job that requires me to stand for long periods and carry heavy objects.

I can’t hide my cerebral palsy. I can only hope that employers aren’t blinded by assumptions about what I can and can’t do, and give me a chance based on my qualifications. So far, no one has come right out and said anything about my physical disability. But I can sometimes tell they’re surprised or uncomfortable when they first meet me.

My learning disability has been more of an issue at job interviews.

In school, a learning disability is challenging but manageable. We have rights to accommodation—for me this often meant copies of notes and extra time on tests. There are policies and people in place to help level the playing field. You just have to know who and what to ask for. However, at no point during my post-secondary education did anyone explain how to advocate for what you need in the workforce.

Thanks to the Accessibility for Ontarians with Disabilities Act, many employers state that they are equal opportunity employers who don’t discriminate against those with disabilities. Some, including the City of Toronto, have explicit policies and procedures for those who need accommodation during the hiring process. I appreciate and wish that all employers had clear policies for accommodation during job assessments.

Recently I’ve sat a few.

In two cases I was told I was just having an interview, but when I arrived, the employer asked me to take a test. The first time, because I hadn’t been given a heads-up, I felt unsure, uncomfortable and annoyed.

Usually, I need a bit of extra time, a computer, spell check and a calculator. Without them, I knew the test wouldn’t be a fair evaluation of my abilities. But I wasn’t sure I should tell the employer about my learning disability. Should I or shouldn’t I? I didn’t want to be taken out of the running. So I didn't.

The second time I was invited by email to a job interview for an administrative assistant, but when I got there it was an exam. In fact, there was no interview!

I was a bit thrown, but I figured I’d make the best of it. Then I eyed the math section on the test and my “can-do” attitude evaporated.

I’m terrible at math, thanks to my learning disability. My learning disability affects my comprehension, spelling, grammar and math skills. I’ve been able to find ways to manage the first three issues, but I’ve never found a way to wrap my mind around math.

In high school, I only took locally-developed and workplace level math. As a result, there was math on that job test that I’d never seen before. When I got home and told my roommate about the letters and brackets, she told me that was called algebra!

I did ask if I could use a calculator. When they said no, I asked if I’d be able to use a calculator on the job. Oddly, they said that would be fine. Throwing caution to the wind, I came clean and told them about my learning disability. They looked uncomfortable and told me to do my best. Not surprisingly, I didn’t get called back for an interview.

So while my search for a day-job continues, I’ve realized that I have nothing to lose, or be ashamed of, in being upfront about my learning disability. In future, if invited to an interview, I’ll ask if it includes an assessment. If it does, I’ll let people know about my disability before we meet.

From here on out I’ll look for, inquire about and follow any procedures necessary for accommodation during the hiring process.

If an employer has a problem with my disabilities and doesn’t wasn’t to accommodate me, I probably don’t want to work for them anyway.

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This hospital trains and hires students with disabilities

Project Search partners with businesses, schools and community agencies to run nine-month skills training programs for high school students with intellectual disabilities. In 2013, the project, which began at Cincinnati Children's Hospital 18 years ago, had grown to include 285 business sites worldwide and 69 per cent of graduates that year got jobs. The project trains students in complex but routine jobs from sterilizing surgical equipment and making defibrillators to working on a carpet-making production line. BLOOM interviewed Erin Riehle (photo centre), director of disability services and Project Search at Cincinnati Children’s.

BLOOM: How did you get the idea for this project?

Erin Riehle: I’m a critical-care nurse and I used to be the director of the emergency department here at Cincinnati Children’s. One day I was sitting in my office, right off the waiting area, and I looked out and noticed that a lot of the people sitting there waiting were people with developmental disabilities. I’d seen a young man with disability bagging groceries in a grocery store and I thought gosh, how many people with intellectual disabilities do we train and hire here?

I called our chief financial officer and I asked how much money do we make by serving people with developmental disabilities? I learned it’s a substantial part of our revenue at the hospital. Then I called our head education officer and asked how many training programs we had. It’s over 60, but not a single one is about training people with disabilities.

I checked with HR and learned we hadn’t intentionally hired a person with an intellectual disability to do any of our jobs. We had lots of volunteers who had developmental disabilities but no employees. It didn’t seem right.

I had some open jobs and I was willing to see if a person with a disability could do them. I invited the head of special education from our school district and someone from our county board of developmental disability to visit with an idea of starting a training program.

BLOOM: You said in a video that you felt children with disabilities who received services at the hospital deserved to see staff with disabilities working there?

Erin Riehle: I think if we’re going to make a lot of money by providing their medical care and our mission statement is to ‘change the outcome,’ then for people with disabilities we should be training and hiring them just as we train and hire other people. It turns out that our families love it and we get so much positive feedback about how much it means to them to see folks working at the hospital who look like their kids with disabilities.

BLOOM: How many people with disabilities are employed through Project Search today?

Erin Riehle: We have 58 people with significant intellectual disabilities working here at Cincinnati Children’s and they’re in a wide variety of jobs. We also have another six programs in the Cincinnati community we manage and each trains about 12 young people a year. Not all kids with disabilities want to work in hospitals so we partner with businesses to offer other programs in a university, a bank, a retirement centre and the sheriff’s office.

BLOOM: And the program has been modelled around the world?

Erin Riehle: Today we have about 285 programs. About 250 of them are in the U.S. and the other 35 are in England, Ireland, Scotland, Canada and Australia. The one in Canada is in Winnipeg. Overall we serve about 2,750 young people a year and 69 per cent go on to get jobs. Every day we get interest from other cities and countries who want us to teach them how to replicate our model.

BLOOM: How old are Project Search students?

Erin Riehle: We have two versions of the program. In one, we partner with local high schools, so it’s a high-school transition program and those students are aged 18 to 21. But we also run the same program as an adult model and typically those students are aged 18 to 30.

BLOOM: How does the program work?

Erin Riehle: The students are here for a school year of nine months. We break it into three 12-week rotations, and each young person goes to a department by themselves, depending on what they’re interested in, and they begin to learn skills, not jobs. We might teach a skill using a video, or doing a picture board and being there with the student until they’ve mastered it. We took all of the manuals used by departments for orienting staff and added pictures to them, because many of our students don’t read or write. So anyone who gets trained in that department, whether or not they have a disability, uses the same books. It’s one of many examples of a modification made to help a person with a disability that helps everyone.

BLOOM: What are some of the hospital jobs students learn?

Erin Riehle: Hospitals are a microcosm of the working world and anything you want to learn you can do in the hospital and then take back out into the community. We have people doing sterilizing of the trays used in surgery, stocking all of the materials used in patient rooms and departments, and transporting patients. We even have a guy who works in pathology in the morgue, changing chemicals in tanks and doing tissue slides. In general, we find people with intellectual disabilities tend to excel at jobs that are very hard, very complex, but also routine.

BLOOM: In your video there’s a participant who sterilizes surgical trays. Can you explain what her day would look like?

Erin Riehle: That’s Jill. She comes in, puts on her scrubs and safety gear and goes to her station, just like everyone else in that department. She has to do at least 30 trays a day, and each tray has 100 to 200 instruments that have to be put in the exact order used by the surgeon, from first to last. I’ll be honest with you, if Jill had left high school without any skills and applied for that position without knowing how to do it, there’s no way in the world she ever would have gotten that job. But if we bring her in while she’s still a high school student and have nine months to teach her the parts of a skill, she can do it as well as anyone else.

BLOOM: If the student is hired when the program ends, do they make minimum wage?

Eric Riehle: They're hired at whatever the customary wage is for a position. They have the same job description and make the same salary as anyone else doing that work. We know that for 2013, 69 per cent of our grads were hired, about 40 per cent by the host business, and 60 per cent elsewhere in the community. It's better than most transition programs, but we're still failing 31 per cent of the time.

BLOOM: Is it challenging to get regular staff to buy into the program?

Erin Riehle: We go out to businesses and explain what we’re trying to do and almost never do we have a business that says no. Our model works and businesses really like it. We do tons of education and talk to the staff during brown bag lunches and we rarely have problems with staff.

BLOOM: So what is the greatest challenge?

Erin Riehle: At Cincinnati Children’s and at every other business site we have several partners who work together to make the program happen. This includes the school district; a community rehab agency; Vocational Rehabilitation, which is a federally-run funding program; and an agency for people with developmental disabilities.

The biggest challenge is getting the partners to work together. We require the teams to braid their funding and expertise and resources. We prescribe the role that each will play. But even though they all have the same goal of helping people with disabilities find jobs, they have their own bureaucracies with their own rules and measures of success. It’s very difficult to get them to collaborate.

BLOOM: What kind of impact have you seen on Project Search graduates?

Erin Riehle: To get up every morning and come in to a workplace and have a purpose and be responsible for something that is not just made-up work, that if you don’t do it it’s going to have a ripple effect, these are powerful things. It is life changing.

We have at least eight folks here at Cincinnati Children’s that have gone on to get married. We have a ton of people who, because of their paycheck, are living on their own and have bought a condo or are living with someone they work with. We have lots of folks spending money and paying taxes and they have friends.

One thing we see, which is a concern and deserves further study, is that in 18 years we’ve had 10 deaths among people with developmental disabilities who work here at the hospital and that’s way out of proportion to our general work population. That has really jumped out at us. Something is getting missed in their health care.

BLOOM: What is the impact on staff?

Erin Riehle: It’s massive. It changes the minds and hearts of doctors and nurses. Instead of a doctor seeing every kid with cerebral palsy as a person that just needs to be seen, he or she starts thinking ‘This kid really could work. I need to make sure I link him up with the right services.’

At least once a week we get a call from a nurse on a unit who says ‘I’ve got a patient up here and I talked to the parents about Project Search and they’ve never heard of it. Can I send them to you to talk?’

So nurses, instead of seeing kids with disabilities as patients, and impersonal objects, they begin to see every kid with a disability as a person who could work, as a valuable person. It really changes the whole care experience of patients with disabilities and their families.

And I hear from doctors all the time that if you’re the head of the autism or Down syndrome clinic and you have some of your patients working here and they’re seen by other families, that makes those families think you’re a better doctor.

It makes them feel more confident in the care they’re getting and it makes them see themselves differently and have higher expectations for their sons and daughters.

The doctor who runs our clinic for cerebral palsy said there was a woman with a child with cerebral palsy who was working on a project here at the hospital. And one day, she said, ‘I saw Matt again, he must be really sick.’ Matt is someone who has cerebral palsy and she made the assumption that he was there because he was sick. But he was here because he was working.

BLOOM: Are you funded federally?

Erin Riehle: We don’t get any federal funding. I still work for the hospital and we have a team of people who go out to set up programs. The way we get funding when a group wants to start a program is that they sign a license agreeing to our rules and outcomes, and they pay for technical assistance to replicate the program. We charge $15,000 per site, which covers all of our expenses and salaries and time going in to work with teams.

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Shattered dreams

By Louise Kinross

A few things collided in my mind this morning.

First I read this exquisite essay by Michael Bérubé about his son Jamie’s search for work. Jamie, 22, has Down syndrome. He’s also a “bright, gregarious, effervescent young man with an amazing cataloguing memory and an insatiable intellectual curiosity about the world—its people, its creatures, its nations, its languages…” writes his dad. Bérubé peppers his piece with vivid images and anecdotes about Jamie that bring him to life.

At age 13, Jamie declared his career goal: to be a marine biologist.

But by the end of Grade 8 he’d scaled back his expectations: first to “marine biologist helper,” then, when asked at an IEP meeting what he'd do for a living, he answered dejectedly: “Groceries, I guess.”

“I’m not sure what I would have felt that day if I had known that he would have to settle for less than that,” Bérubé, a literature professor at Penn State, writes.

Despite a raft of part-time volunteer jobs and minimum-wage positions in a mailroom and doing recycling during his teen years, Jamie's post high school assessment on work suitability “filled us with despair. Factory work, nope; food service, nope (not fast enough); hotel maid service, nope; machine and auto repair, nope.” Trials to see if Jamie can do conference set up or stack shelves in a supermarket don’t pan out.

After two months sitting in the basement watching Youtube, he begins working two, and then three, days a week at the local sheltered workshop. Jamie sets up vials used to collect hazardous materials and makes $8 to $10 a week. Yes, you read that correctly.

Go back to the third paragraph and read Bérubé’s descriptions of a kid who bubbled over with his impressive knowledge and love of sea animals. Then tell me that the thought of him sitting at a table organizing inert containers that have nothing to do with him isn’t shattering. A horrible waste.

“It is not the life we – and he – wanted to imagine for him,” Bérubé writes.

But it’s common.

You’ll recall that disabled workers are the only group that has no wage floor: they don’t have to be paid minimum wage. A person doing manual work in a sheltered workshop might make $1.45 an hour, or they might make a lot less. Meanwhile, as Curtis Decker, executive director for the National Disability Rights Network, notes in this story, workshop executives, who are paid from $250,000 to $400,000 a year, vehemently resist raising worker pay to one-third that of minimum wage.

Private horror stories include the rendering plant in Iowa that paid men with intellectual disabilities $65 a month to get up at 3 a.m. every day and gut turkeys, some for over 30 years.

When Bérubé’s story popped up on my Twitter this morning, it held a certain poignancy and ache for me.

I’d just received information about a day program that my son could attend when he leaves school in a year at age 21. It’s a program that would cost about $1,000 a month (is that the equivalent of what parents pay for daycare of small children?)

There’s nothing inherently wrong with the program.

But I can't help thinking of all of the young adults who will go there, students like Jamie, who grew up with their own unique visions of what one day they’d “be.” And how for all of these youth, the day program or the sheltered workshop or sitting at home watching TV, whatever the endpoint, will be a complete disconnect from what they imagined.

My son’s dream was to be a zookeeper. He’s always had a special fondness for unusual creatures like the tapir, which looks like a dense pig with a trunk. He recently created his own sign to depict the unusually long snout the tapir uses to pluck fruit from trees. If it wasn't for my son, I never would have known that the tapir is born with spots or stripes that later fade; has been on the earth for millions of years; and is part of the family of horses, rhinoceroses and zebras.

We haven't brought up the field of zookeeping recently. I'm not sure how I would explain that my son's passions will have nothing to do with his future work. It seems cruel.

Yesterday I read about “the self-enhancement bias,” our evolutionary tendency to inflate our abilities, so that each one of us presumes we are so much more capable and talented than the average person: “Your wildly inaccurate self-evaluations get you through rough times and help motivate you when times are good,” says David McRaney, author of You Are Now Less Dumb. “Research shows that people who are brutally honest with themselves are not as happy day to day as people with unrealistic assumptions about their abilities.”

It made me think of Jamie, and how he'd been forced to progressively dismantle his dream of working with sea animals, how youth with disabilities aren't allowed to have the “delusions of grandeur” that the self-enhancement research suggests is wired into us to keep us hopeful, emotionally afloat and moving forward. 

How had Jamie's passion to study or care for other-worldly and diverse sea life been transformed into the more “realistic” counting and packaging of meaningless vials?

Despite parents who were creative and bold and resourceful, it was the only option left to him.

Yesterday, this piece about how companies keen on designing diversity programs overlook people with disabilities struck me as sad and darkly humorous. According to a British consultant who helps companies recruit and train staff with disabilities, HR folks often dismiss her, saying: “Oh, we're not doing disability, we're doing women… and black people at the moment.”

This morning, Canadian researchers announced in the American Journal of Human Genetics that they had “solved” 146 rare disorders, including identifying 67 new genes that haven’t been associated with rare diseases before. “When we launched this project, we predicted we might explain, or solve, 50 disorders; we’ve almost tripled that goal,” said Dr. Kym Boycott, lead investigator and clinician scientist at the Children’s Hospital of Eastern Ontario.

It sounds exciting, doesn’t it? But the word “solve” is misleading. Identifying the underlying genetic basis of these rare disorders doesn't “solve” the disorders for anyone living with them. And the truth is that for most of these conditions there never will be treatments: there isn't money in developing therapies for conditions where a tiny population benefits (please see The politics of funding).

I learned this 18 years ago when I started an international association for families of children with my son’s rare genetic condition. At the time, the two genes that are deleted in this syndrome had been identified. I remember how excited I was to interview the scientists and write stories in our newsletter. In fact, there was even mainstream research interest in one of the genes because it’s a tumor-suppressor; understanding it was thought to be a window into understanding certain types of cancer.

Eighteen years later there are no tailored genetic treatments for this syndrome. And there never will be.

The Canadian researchers say a benefit of their gene discoveries is to “offer informed reproductive counselling.” I guess that means that at some point we’ll be able to diagnose these conditions prenatally and women can choose whether to abort or not.

But other than the “gee-whiz, isn’t that cool that we know which genes are responsible for this disorder?” these findings will do nothing practical and meaningful for the children and families affected. Eighteen years ago the news would have sparked false hope in me. Now I know better.

Instead of throwing money at studies looking at the genetic basis of rare conditions—research that will never translate into workable therapies—I’d like to see money invested in improving the lives of kids and adults who are here now, people like Jamie, who once dreamed of being a marine biologist.

To me, finding a way to prevent the passions of people like Jamie from being crushed is a more urgent and noble research goal. I bet you it's also more challenging and less glamorous.

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Walgreen proves the business case for hiring 'disabled' staff

In 2006 Randy Lewis changed the way Walgreen Co. does business.

As senior vice-president of supply chain and logistics for the U.S. drug store chain, Lewis oversaw 10,000 employees and up to a thousand new hires each year. As a father to Austin, who has autism, he knew the difference a job could make in the lives of young people with disabilities.

In No Greatness Without Goodness Lewis explains how he brought his corporate and personal worlds together, transforming Walgreen's distribution centres into inclusive workplaces where people with all kinds of physical and mental disabilities, many deemed unemployable, work to the same standards and earn the same pay as other staff.

The company's new mindset is proclaimed in a giant sign when you enter the building with the words "No 'them'" in a circle and a line drawn through it.

BLOOM: What is the message of your new book?

Randy Lewis: It’s the story of how I got involved with disability hiring, why we did it as a company and how we were able to go from essentially zero to 10 per cent of the workforce in five years.

The reason I wrote it was one, so that people could understand that people with disabilities could work effectively and have a positive impact on the work environment. It wasn’t just as good, it was better.

And two, that we all tend to underestimate our power to effect change and that everyone, I think, at their core really does want to change the world. As leaders, if we can tap into that in ourselves, that we want to do good things, we can unleash that in others.

BLOOM: How did you get the idea to hire people with disabilities?

Randy Lewis: I have a son with autism and so watching him grow up, I shared the same dream of other parents like me—to live one day longer than my child because you wonder what will happen to them after you’re gone. We’d go to these IEP conferences at school and I realized disability plays no favourites. It strikes traditional and non-traditional families, rich and poor. I got to thinking: 'What is going to happen to all of these other kids and parents?' If we’re hiring over here at Walgreen and there’s a need over there, why can’t we bring those two worlds together?

BLOOM: How did you sell the idea to the company?

Randy Lewis: I said we’re not going to lower any of our performance standards, we’re a business, not a charity, and if it didn’t work out, we wouldn’t do it. What I discovered as an employer was we had lots of invisible walls around us—systems that we thought were giving us the best performers, but weren’t.

We were screening out a whole class of people who would never get through the Internet job application, or interview well, or look and talk like everyone else, or have all of their limbs. That was a huge turning point.

BLOOM: How did you get buy-in from existing staff?

Randy Lewis: We'd had some experience with enclaves, where we contract with another company and they bring people in with disabilities, typically to do janitorial or ancillary tasks, and they supervise them. All our employees liked it, management liked it. Here we are helping these people, but they weren't integrated.

One day a team member told the group about how important this work was to her and she showed a picture of these people with disabilities. They were all wearing the same shirts and she was in the picture with them, also wearing the same shirt. She made a point of telling me she was not 'one of them,' but their sponsor. I knew that was a problem. We had not embraced people with disabilities as equals.

After that we hired a young man with Asperger's to work on the line at one of our centres and he did a fantastic job. We had two women he worked with and I talked to them and asked 'How are things working with Chuck? Are people accepting him?' They said: 'If they don't, they have to deal with us,' and I thought now we're making progress.

Each of our buildings has different coloured plastic totes for shipping, and in this building they were grey. A couple of times every day a purple tote would get mixed up and come down the line and Chuck loved those purple totes. He would dance every time he saw one. At one point we said 'Is that appropriate behaviour for the workplace?' But then we got to thinking 'Why not?' We'd rather have him dancing than complaining.

So we started learning about inclusion and we were about to build a new generation of building. We had experience with the enclaves, we knew Chuck could work on the line, so I thought maybe this is time. Why don't we develop our automation with people with disabilities in mind.

BLOOM: How did you decide on what proportion of staff would have disabilities?

Randy Lewis: When it came time to plan a new-generation distribution centre 10 years ago to handle our growing business, I believed it was an opportunity to 'go big' with disability hiring in an intentional manner. We were designing new equipment and we thought let's make it effective for people with disabilities if we can do that with negligible cost.

We talked to a fellow who worked with people with autism. We knew we couldn't afford a lot of job coaches and we asked him how many typically abled people would we initially need to provide support to a person with autism, thinking the person with autism might be the most difficult to employ. He said maybe two people. So we decided one-third of the workforce is going to be a person with a disability.

No one had ever done this anywhere in the world in a production environment. If we don't get orders shipped accurately we're not in business. This was a clear and elevating goal. We would hire 200 people with disabilities out of 600 to staff this new-generation centre we were building in South Carolina.

Two years later we opened up a similar centre with the same goals near Hartford, Conn.

BLOOM: What did you learn?

Randy Lewis: We discovered that people with disabilities could do all of the jobs, not just the jobs we'd designed the equipment in mind for. The automation we put in helped everyone, not just the people with disabilities. We brought in managers from our other centres to show them that it wasn't about the automation. That they didn't have to have specialized equipment that we had in the new centre to be successful at this. They liked what they saw and were ready to try it out in their less automated buildings. And I asked them to set a clear and elevating goal and they said let's hire 1,000 people by the year 2010.

BLOOM: Why were the staff with disabilities so effective?

Randy Lewis: We underestimated them, it's as simple as that. When we measure performance, the people with disabilities perform as well statistically as the others. The standard is not that they have to be Superman or Jackie Robinson. But the employees with disabilities also have fewer accidents, better retention, less absenteeism and they make people better managers and create greater teamwork.

BLOOM: So it sounds like overall there were definite advantages.

Randy Lewis: Yes.

BLOOM: Did the culture in these environments change for the better.

Randy Lewis: I asked people in our South Carolina and Connecticut centres who'd worked in other buildings without disability hiring, 'How did you rank engagement when you were there?' And they'd say probably a seven or eight out of 10. Then I asked them to compare that level of engagement with what they saw in the building they were in now. They said the eight would drop to a two.

'We didn't know what engagement was until we got here,' they said. 'We didn't know what teamwork was like.'

If you ask managers in the buildings with a large percentage of people with disabilities what is their number one job, they'll say 'My job is to make everybody who works for me successful.' When you have that kind of attitude the workforce notices and they respond to it.

BLOOM: How has the experience created better managers?

Randy Lewis: We've learned to 'manage in the grey' and by that I mean we want to manage with values or principles, not rules. People like rules, bosses like rules because they're easier to administer. For some of our supervisors that was uncomfortable at first, but I said if it's just about administering rules I can get my own children to come in and run this place. We asked people to look at the purpose of rules and apply what were the principles of the rule, rather than the rule itself. This caused us to look at a lot of our policies.

We changed the way we hire and recruit because a lot of people can't get through the Internet application system or need help applying. If there's a discipline problem, we let the employee bring in a parent or advocate because we want to make sure they understand and we understand.

Sometimes we make exceptions to a rule. For example, I remember a situation where a young man became frustrated because he had to work overtime and he was going to miss a doctor's appointment. He punched a computer screen and broke it.

The rule is that if you break something intentionally, you're fired forever and forever banned from the company. We got to thinking: 'Is that a good rule? Is there ever an exception?' Even Aristotle way back when noted that human behaviour is not mathematics, it's not finite reasoning, there are exceptions to all things.

So we went back and had to look at that policy as it applied to all of our staff. We needed a framework. And it was: 'Is there an extenuating circumstance? Is there a reason to expect the person won't do it again? And what's the likelihood that they'll be able to find employment elsewhere?' We don't decide in favour of the employee in every case, but we did in that one.

Our managers say this idea of managing in the grey is the most powerful thing that's made them better managers.

BLOOM: It sounds like they feel empowered in a new way.

Randy Lewis: The change is huge. They talk about managing with love, a word we've never used in the workplace.

A few years back we had the president of a Best Buy division come through for a tour and afterwards he sat down with our managers to ask questions. 'I've heard all the good things about this place,' he said. 'What's a bad day like?'

And essentially the supervisors said: 'A bad day is when I come in with my own problems and I'm not focused on my staff and the work. You know that saying 'You come home and you want to kick the dog?' If I do that at work my staff will either shut down or start acting out or they'll confront me and tell me why I'm being a jerk. Or they'll come up and give me a hug. One thing I've learned is that when I'm here, it's about them, not me.'

BLOOM: How costly is it to train people with disabilities?

Randy Lewis: It was negligible. What we did was go out in the community and get partners. We demanded that disability agencies in the community form a coalition and work together with us. We built a training room in a community-rented space and for a year the community screened and trained people and taught them how to use our equipment. Now we have training rooms within our buildings.

Typically a new employee has 60 days' probation and by 60 days they have to be up to full productivity. We anticipated that people with disabilities might need longer because out training might not be right for everyone. So we created an alternative pipeline into the company. If you have a disability and want to come in that route you are paid as a temporary employee, with no benefits, and you can stay in that group as long as you're progressing towards full productivity. It might take 60 days or less, some may take 90. One person took a year. Once they're at full productivity they're hired as permanent staff.

BLOOM: In a news story I saw you talked about an accommodation where you name, as well as number, stations. Can you explain that?

Randy Lewis: For someone who has difficulty with numbers and directions, we've named stations as a group of animals in a zoo. So we might say 'You'll be working at rhinoceros in zoo.' We also have a race-cart alley and a hamburger alley. So perhaps you'll be working at the hot dog station in hamburger alley. These are simple things that help some people. Most of our accommodations cost less than $20 and most are paper and pencil.

BLOOM: What's been the greatest challenge in implementing this model?

Randy Lewis: The biggest impediment to overcome is fear.

BLOOM: How did you manage that?

Randy Lewis: To outsiders in the organization I said: 'We're here to make money, we're here to make it work. If people with disabilities can't to the job, they won't be working here.'

To those who reported to me I said 'Our standard is to give it our very best, so if it doesn't work, we can tell the world this is not possible. Give it your very best, and if it doesn't work, we know no one else could have done it better than us.' That was very freeing for everyone.

We also said 'We don't have all the answers. There are going to be problems we can't anticipate, so let's not worry about those. If you anticipate a problem, let's figure out a way around it. And you can't bring a What if? unless you've thought of a way around it. Most of the problems we anticipated never happened.'

BLOOM: What was a problem you didn't anticipate?

Randy Lewis: We thought all of our systems were great for getting us the best employees. We thought we'd build this and as soon as we put an ad in the paper all of the people with disabilities would come flocking to us. We didn't think about the fact that this is a group that doesn't read the paper every morning looking for places to work. It's not a group that trusts employers. It's a group that may have difficulty in even getting to the job site for the interview. We didn't realize we had so many invisible walls.

It took some work for us to say gee whiz, we're going to have to do something different. We worked with community agencies. We've had to teach them to understand our jobs and send us people that they believe will be successful.

BLOOM: What are common myths about hiring people with disabilities?

Randy Lewis: That they can't do the job, it's going to cost me more to make them effective and when they fail I will get punished.

BLOOM: Has Walgreen hired people who were considered unemployable?

Randy Lewis: Lots of them. For most of them it's their first job.

BLOOM: What does the average person get paid?

Randy Lewis: They make close to US$30,000 on the production line.

BLOOM: I heard that in a couple of your distribution centres as many as half of all employees have disabilities.

Randy Lewis: In our original centre in South Carolina, 40 per cent have disabilities. In our newer centre in Connecticut, 50 per cent have disabilities. In 2011 we achieved our goal of having 10 per cent of the workforce made up by people with disabilities. Before I retired 14 months ago, the centre managers from across the country met and set a new goal to reach 20 per cent.

BLOOM: What kind of impact do these jobs have on people with disabilities?

Randy Lewis: For many a world of possibility, opportunity and responsibility is opened to them for the first time. They have relationships they've never had before. They have money they never had before. And there are some unanticipated consequences, too. For instance, some become like teenagers: they stay up too late at night playing video games because they can afford them now. It's a whole village of people working together that's expanded everyone's way of thinking.

BLOOM: What advice would you give a parent who's concerned that their child won't be able to get a job due to disabilities?

Randy Lewis: The words we hear as parents of a child with a disability are 'always' and 'never.' We have found that that's not necessarily true. I was in Canada yesterday with a new organization of employers called SensAbility. They're going to look for employers in Canada who will help spread this model. Ontario's Lieutenant Governor David Onley has taken employers to visit our site and is very active in helping Canada advance on this front. So I'm very hopeful about Canada.

BLOOM: What about your son. What are his dreams?

Randy Lewis: I wish I knew. I wish he could tell me. He's 25 and he works about 12 hours a week in a Walgreens store. There's a Michigan company building a distribution centre about an hour from here in Chicago and the owner has talked about how one day he wants Austin to be their employee. So we're going to go up and see it.

BLOOM: What impact do you hope your book will have?

Randy Lewis: I hope people read it and believe it's possible and try it. There are enough models out there to do it. We make only three cents on the dollar, so our margins are razor thin. If Walgreen could do it—and we didn't have any models to work from—anyone can do it.

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Return on disability

This story on CBC's The National last night looks at the economic benefits of hiring people with disabilities. It includes an interview with Rich Donovan, CEO of Fifth Quadrant Analytics in New York City, a company that helps businesses assess how well they’re engaging people with disabilities as employees and customers. We interviewed Rich here last year. Check out how companies like Walgreen's are making money by innovating in ways that accommodate employees with disabilities.

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Connecting the dots

On the weekend I was in Chapter's and noticed this memoir on a prominent display: I'm Sorry You Feel That Way: The Astonishing but True Story of a Daughter, Sister, xxxx, Wife, Mother and Friend to Man and Dog.

Entertainment Weekly called it a must-read and described it as "nostalgic, sad, and pee-in-your-pants funny." A review in the Los Angeles Times says "it's hard to recall another collection of essays, or a memoir, with more natural charm."

I turned to the back cover and read this:

Here's a quick way to determine if you're going to enjoy Diana Joseph's essay collection, I'm Sorry You Feel That Way. Read the following:

"Yesterday my son was turning the pages in his eighth-grade yearbook so we could play a game I came up with called Guess Which Kids are Retarded. The boy thought the game was terrible, so cruel and so mean that I should have to pay a fine, I should have to pay him ten bucks every time I was wrong."

If you find that paragraph offensive, you will hate this book.

If you know you should find this paragraph offensive, but secretly find it hilarious, you should buy this book. Immediately.

Really? Let's imagine the author had replaced "retarded kids" with another marginalized group: gays, for example, or immigrants, or people with physical disabilities? Would that line still be considered funny? This book was published in 2010. Has humour evolved so little that "retarded kids" must be relied on as the brunt of jokes between mother and son?

In the past, I would have just put the book down and forgotten it.

But instead, I couldn't help remembering a conversation I had with a Toronto mother of a young woman with intellectual disability last week. She was telling me about her daughter's efforts to find work. Mother and daughter had visited a case worker at an employment support program. They were referred to agencies who could help the daughter find work.

These agencies place people in positions at well-known retail, grocery and restaurant chains.

But guess what's on the job description at every single one? Cleaning the bathroom. Yes, cleaning the bathroom is on ALL job descriptions made available to people with intellectual disabilities. The mother and daughter were forewarned.

Is there some reason why people with intellectual disabilities are better at cleaning toilets than the average person? 

Yes, I guess you could say someone has to clean the bathroom, and students and young adults who are looking for work have to be willing to do anything.

But what does it tell you about how the business world, our government and our culture view people with intellectual disabilities when the ONLY job available to them involves cleaning human waste?

And is the message at the employment support program any different than the one the memoirist above gave her son—the demeaning one that won her rave reviews? Even Library Journal calls her "trenchantly funny." 

The employment support program explained to mother and daughter that whenever a person is placed in a job, the agency that did the placement receives a grant from the government. "Person with intellectual disability cleaning bathrooms? Job well done!"

Sometimes it's really depressing to sit at my desk, reading news stories on disability and hearing from families on the frontlines. 

Sometimes I'm tired of connecting the dots in a system that blatantly discriminates against people like my son, then serves it up as sanctioned literary comedy.

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Do you have a physical disability? Want a job?

Teens with physical disabilities are about half as likely as typical teens to have part-time jobs. They may face discrimination and employers who aren’t willing to provide work accommodations or training.

Research shows that volunteer and work experiences during high school are predictors for finding well-paid work as an adult. Yet getting those jobs as a teen is harder. Many employers complain that young workers aren’t ready for work and lack the social- and problem-solving skills they need.

Holland Bloorview researchers are doing a study to learn more about the job skills teens with and without disabilities have.

We’re looking for high-school students in Grade 11 or 12 in the Greater Toronto Area to participate in a mock work interview and employment activities as part of this research. Teens with and without physical disabilities are sought.

Participants receive a $10 gift card, credit for volunteer hours and feedback. Please e-mail Sally Lindsay.

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An insider wakes Wall Street to the disability market

Rich Donovan is founder and CEO of Fifth Quadrant Analytics (FQA) in New York City, a company that helps businesses assess how well they’re engaging people with disabilities as employees and customers. With 1.1 billion people globally, the disability market is the largest minority market, Rich says, but one typically ignored. FQA has developed a Return on Disability Rating that measures how well a business is performing—in recruiting disability talent, building its disability customer base, and mining business innovation from the adaptation that disability prompts. In 2006 Rich founded LIME Connect to match the brightest people with disabilities at top universities with employers. Rich (above with son Maverick, 2 1/2) has cerebral palsy. Meet Rich March 27 at a BLOOM speaker night.

BLOOM: Before starting FQA, you were a very successful trader for Merrill Lynch. I spent my university summers working in brokerages here and it didn’t strike me as a place where people with differences would be welcomed. What was your experience?

Rich Donovan: The opposite. I found in that business that it doesn’t matter who you are or what you are, whether you’re purple, blue or polka dot, if you can provide results, you’ll be very successful. Initially you may have a higher hurdle to jump over, but once you’ve proven your value, your worth, there’s no better business for someone who is 'different.' I was on the trading floor and nobody cared what you looked like as long as you got the job done and got the results in the door. For me that was the perfect environment because I delivered, every year, consistently, day in and day out.

BLOOM: How has having a disability influenced your work?

Rich Donovan: If I wasn’t disabled, I’d probably be either a fighter pilot or some kind of guy working with machines because that’s always intrigued me. Because I have a disability, I have to do things a bit differently. It’s caused me to develop strategies for dealing with a world that’s not built for me. In the worlds of business and finance, that’s what everyone is looking for: that unique point of view in the world that nobody else has, that nobody else can develop. The great thing about disability is that it’s inside us. We have to [adapt] day in and day out to survive, and when you start to apply those skills to business and financial problems, and to things that people come in looking at in the same way in general, it gives me a huge advantage.

Working for me is easy. Try navigating the New York subway system. In a day that involves getting to and from the office, dealing with complex financial issues is the easiest part of my day. That turned my perspective completely upside down. For most traders the hardest thing is to remove emotion from the calculus. For me, trading wasn’t the most risky think I did every day. That changed the perspective of how I look at business problems.

BLOOM: LIME recruits high-achievers with disabilities from the best universities and matches them with employers. How could we broaden this to bring people with a variety of intellectual and physical disabilities, who don’t have degrees, into the workforce?

Rich Donovan: That’s a very complex question, how you bring this class of skills levels right up and down.

LIME recruits mostly on campuses but also experienced hires as well. The focus is from the corporate perspective, on what corporations need in terms of talent as opposed to the typical vocational rehab model where you take a square peg and find any whole it can fit into and it typically fails. There’s a mismatch. Companies that are just getting their feet wet want to do something to get someone in the door. When that person doesn’t match a job, they’re turned off and don’t want to touch it again.

The way LIME addresses this is very simple: It takes people with disabilities who already have the talent the company wants. About 90 per cent of the people LIME sees on campus have learning disabilities—things like dyslexia. Because I’m the founder, people assume that most of our recruits have physical disabilities. But they mostly have learning disabilities because that’s where the numbers are.

A big issue I have with how the United Nations and governments work with disability is that they’re overwhelmingly branded toward physical incentives, when less than 10 per cent of the people with disabilities use a wheelchair or have mobility problems, less than 3 per cent have vision issues, and less than 3 per cent have hearing issues. But that’s what dominates the discussion of disability.

The reality is that 71 per cent of disability is invisible. It’s a learning disability, it’s chronic pain, it’s something you wouldn’t know seeing someone walking down the street.

Because organizations that focus on physical disability have been around for the last 40 to 50 years, the brand of disability is the wheelchair, or the white cane. But that doesn’t reflect the numbers.

To fit a market into a business context, we make a conscious effort to ignore that—to stay condition-blind and focus only on what matters to consumers with disabilities and to potential employers. I frankly don’t care what medical diagnosis you have. I care more about how it affects your behaviour as a customer and as a potential employee of a company. That’s the difference in what we do.

BLOOM: You’ve said the disability market is the biggest minority market in the world, if you include people with disabilities and their close relatives. Why doesn’t it feel like we have any power?

Rich Donovan: If you look back from the 1950s to the 1990s, disability groups have painted a picture of disability that was so pathetic, and so 'God help you' and 'I need you to help me to keep these kids safe.' That creates a brand in society that these guys need help, they’re charity, there’s nothing of value there. But when you look at the actual statistics today, when society has dramatically changed, the numbers don’t bear that out.

People with disabilities globally, not counting friends and family, are 1.1 billion people, which is the size of China.

‘Yea, but they have no money,’ people say. Well, that’s part of it. We know that the average income is lower among people with disabilities. But it’s still 75 per cent of the typical person. That’s serious earning power. If you look at the bell curve and look at a normally distributed population you begin to realize that income level is brought down by the lower functioning boats. But if you look at the average consumer with a disability, they may make $5,000 to $7,000 less a year, but that’s still almost $30,000 a year.

The pushback I get from charities is that ‘these people are poor’ and they’re not. Yes, there is a segment of this population that is poor, and there’s a segment of every population that is poor. But it’s not unique to disability. The reason no one has heard of these folks as consumers and savers is because there’s a vested interest in charities keeping the view that they’re poor.

The perception is that all people with disabilities are poor. I would say statistically a higher percentage of people with disabilities are below the poverty level than the typical population, maybe 20 to 25 per cent. But that still leaves the vast majority of folks who are active consumers. And even people below the poverty level are active consumers.

As we evolve from the social mindset of ‘take care of me’ to ‘hey, these people are consumers with demand’ that’s when change will happen.

That’s why you haven’t heard of this before. Attitudes have changed and education has changed. Guys like me didn’t exist 30 years ago because we wouldn’t have got the education we needed. People say ‘You’re one in a million Rich,’ but I’m not. There are millions and millions of people like me.

BLOOM: You mentioned Walgreens—the largest drugstore chain in the U.S.—is a leader in employing people with disabilities. What have they done?

Rich Donovan: It started 10 years ago when the senior vice-president of their distribution business—who happened to have a child with Down syndrome and who’s a smart business guy—realized 'Gee, what’s going to happen to my kid when they leave school? I need to figure out how he or she will be a productive member of society.’ He started thinking about how he could integrate people with disabilities into his business. It started out as an altruistic approach to hiring people with disabilities. He began in one distribution centre in South Carolina. He hired about 10 to 12 people with disabilities to take product in from the vendors and ship it out to their stores. All kinds of machinery and processes are involved.

Over the next year they realized something unique. They started to see that their costs were going down. They couldn’t figure out why. Then they realized that people with disabilities did things a bit differently on the floor. They saw that they took complexity out of the process. Adapting the workspace for these people with needs and accommodations reduced complexity. So let’s say instead of typing something in repetitively, a process becomes colour-coded or symbol-based. These employees changed the way they were interacting with the environment and reduced costs by 20 per cent. Every step has a cost and every time they make a mistake there’s a cost.

The average cost of a distribution centre is $10 million a year to run. So Walgreens was putting $2 million in their pockets every year.

BLOOM: Are staff with disabilities paid at market rate there?

Rich Donovan: I hope they pay them more for saving them money. There’s no wage subsidy at Walgreens. Wage subsidies disgust me. I’m disgusted by the fact that the only people you can pay below minimum wage are people with disabilities. Walgreens has developed a model with its own training programs and job coaching and will take those learnings to other sites and centres.

BLOOM: I read that over 40 per cent of the 700 staff in Walgreens’ South Carolina distribution centre have intellectual or physical disabilities?

Rich Donovan: I think what they’ve done is spectacular. People in this field still think of it as a recruiting effort, but it’s actually far more powerful than that. It’s changing business process. People with disabilities have had to learn ways of adapting. If you expand that across the entire economy and the way every business does things, think about what that 20 per cent number looks like. How powerful it is.

BLOOM: I think what Walgreens has done is amazing. But I wonder if in some ways it doesn’t still pigeon-hole people with disabilities as only able to work in assembly-type jobs? When my son was at a segregated school, they had him putting flashlights together—I guess in anticipation of him doing piece-meal work in the future. What if my kid isn’t interested in that?

Rich Donovan: When it comes to disability, one of the things we’re poor at is seeing the trees and not the forest. Walgreens is the first out of the gate and it’s going to take years for other businesses to realize what they’ve done and start to get comfortable with the concept. People start with one thing and then they realize ‘I can apply these insights here and here. I can move them into these other environments.’ The smart people start to realize that there’s real value in these insights. There’s so much value, so much profit to be made here, that smart people who want to make money are going to jump all over this. All that will happen, but it’s a question of how long will it take? I think it will probably be three to five years.

BLOOM: What is the purpose of your company 5th Quadrant?

Rich Donovan: To put rigour and process and numbers around how you make money relative to disability. How does a company take this amorphous concept of a person with disability and put it to work for their shareholders? How do they build value from disability? That's how every other minority market has developed over the decades. Now, I don't want it to take 70 years, like it did for women. I don't want it to take 30 years, like it did for racial minorities. We've learned lessons there that can be applied here.

We’re basically giving every company that we analyze a score—from zero to five—five being good, zero being not so good. We assign each company a rating.

BLOOM: How can companies improve on their rating?

Rich Donovan: For each company the approach will be different because each company creates value for its shareholders in different ways. For some, talent tops the list. How do you get people with disabilities in the door and get the most out of them and keep them there? For firms where process and innovation is key, we'll look deeply at productivity. You take the Walgreens model, where you take innovation from disability and apply it across your business model. For me, how firms look at their customer is absolutely critical. Astonishingly, this is probably the least commonly addressed factor today. Among the questions we ask—how do you leverage disability to maximize revenue from your customer base?

And that includes not just people with disabilities but their friends and family, who are probably more numerous and more wealthy than the people with disability. As a parent, you know how you react when you see a company reaching out to disability. It bonds you to that brand. We’ve studied this, we’ve studied what this bond looks like. No one has really looked yet at what do people with disabilities actually want as a customer? What do they desire? There are examples here and there. This in my mind is the biggest opportunity for business: to start activating on the customers.

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