Deconstructing Sheltered Workshops: Confusion Abounds


I recently had the opportunity to publicly discuss the Garrie v Janus ruling of the Human Rights Tribunal of Ontario which decided in favour of Terrie-Lynn Garrie; that her pay of $1.25 an hour was discriminatory and that she is to be awarded damages.


Beyond this specific situation, the HRTO has also pressed for more information about sheltered workshops across Ontario. US statistics indicate that almost three times as many resources are invested in segregated activities than in helping people with intellectual disabilities live as included citizens (homes, workplaces, social life). It is estimated that the situation is also 3:1 in Ontario but there is no available data to determine this. It’s something I am hoping the Legislature of Ontario Select Committee on Developmental Services can identify as an issue and find some answers.

We really don’t know much about where people with intellectual disabilities live, work, and play in our communities, and we certainly don’t know enough about the disconnect between our investment in the Developmental Services system and the results it produces. The system is supposed to be delivering inclusive outcomes, but given that the majority of its activities seem to be focused on infrastructure supporting group homes, sheltered workshops, and day programs, we need to ask some hard questions, get some solid answers, and start developing some firm plans to point the DS ship in the right direction.

In some ways it is simple – invest in what includes people, not what excludes them – and yet, it is very complicated. Some evidence of this is found in the recent column by Christie Blatchford “Case of seeming cruelty more complicated than it looks.”

Ms. Blatchford is correct that the situation is very complicated, and although she made a game effort to unbundle the facts, there is still some confusion to this story. This is not a criticism of her efforts, it’s just that when it comes to something as convoluted as sheltered workshops, there’s nothing simple about it.

It’s first important to clarify that there is no law that has closed sheltered workshops. There are in fact thousands of people, mainly those with intellectual disabilities, in work-like settings all over the province, where they are receiving “wages” similar to the $1.25 in the Garrie-Janus case. These workshops are in a very slow decline, but the slow pace of this social change (which has been going on for about 40 years) is clearly about to speed up.

The United Nations Convention on the Rights of Persons with Disabilities and other moral and legal frameworks have brought new attention to these practices, and we are now at a critical juncture. We continue to invest heavily in segregated infrastructure (mostly established in the 1970s) when we need be adopting modern practices that result in inclusive outcomes. This requires entirely different types of supports, which although proven very effective, are grossly underfunded.

I’m not a lawyer or a labour law specialist, but as I understand it, one of the circumstances in this situation that made for a relatively clear human rights violation was the fact of non-disabled individuals working alongside individuals with disabilities, all of whom were performing similar tasks, but at decidedly different pay. That’s an ugly optic, even if it is complicated.

Whether someone’s mother approved of this or not, or whether the company told certain employees they could take coffee breaks as often as they wanted, or whether the low income amounts were reported to Ontario Disability Support Program, that did not sway the tribunal, and that is in my opinion a very good thing. When citizens of any type are being exploited, it’s not uncommon that caring or well-meaning people could be part of the processes, structures, or environments where discrimination is taking place.

But it would be a mistake to get trapped in the financial details or to focus solely on equity. The bigger picture here is a slow but sure social change where people with intellectual disabilities are emerging from the shadows and margins of their own communities.

It is no surprise that Ms. Garrie has not found life easy after leaving the workshop. I do not know her life history, so I’ll not speak to that, but refer instead to the typical profile of a person her age who has her particular disability labels: she would have received a segregated education (Special Education classrooms or a school that was entirely segregated) followed by adult services (such as day programs or sheltered workshops) where she would be similarly isolated from authentic community experience (such as a real workplace), and in a group living situation (such as a group home) with a staff-centric environment, sharing space with people that she never chose to live with.

For a person in their 40s with such a history, they would need a mix of paid and unpaid support to establish themselves in the community as a neighbour, an employee, and a valued citizen.

It is clear to me that we do need to bring sub-minimum wage practices to an end. This issue has exploded in the United States. President Obama has weighed in. There is a massive class action lawsuit in Oregon. This change in Ontario will happen, likely through a mix of voluntary transitions and legislative transitions.

But the real issue is planning for the transition. The closing part is relatively easy. It’s what happens next (or more appropriately, leading up to closure) that takes investment of thought and resources. There are many agencies that have been delivering inclusive outcomes for people with intellectual disabilities for 20 years or more, but these are by far in the minority, for the simple reason that their activities have not been significantly supported.

They have been considered on the fringe, likely labeled as “innovative” and thus isolated from mainstream funding sources. They operate without much infrastructure. Most of their work is about building relationships. This is harder to understand than building activity centres or group homes, but it’s what needs to be done if we believe in an inclusive society and also if we believe our tax dollars should deliver results we can be proud of.

The sheltered workshops could close tomorrow, and reopen the next day as “day programs” with no pay at all (instead of $1.25 an hour) and I believe most of the same people would come in and take their place around the tables just as they have always done before. So money has been the catalyst for drawing attention to this issue, but it’s not really THE issue.

This is really about how our society (and taxpayers) have invested and continue to invest billions of dollars in a system that serves mainly to segregate people with intellectual disabilities from their communities. Some 40 years ago, this was an advancement, as these centres were a great improvement compared to the large institutions located on the outskirts of town.

But now the next phase of this social change is long overdue. It’s not about providing people with a place where they can “sort of work” and sit on a sofa to pass the time. It’s about possibilities. It’s about respect and dignity. It’s about valuing people with intellectual disabilities as citizens who are not broken and who deserve to be welcomed everywhere in our communities. And it’s about how all citizens will benefit from their contributions.

I highly recommend “Community participation for adults with an intellectual disability: review of the literature prepared for the National Advisory Committee on Health and
Disability to inform its project on services for adults with an intellectual disability” for the development of a broader understanding about segregation versus inclusion.

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LinkedIn Fun!


Whether you have joined LinkedIn or not, you might find my blog title a bit odd. Isn’t LinkedIn sort of like the social media network designed for not having fun? Well, although it doesn’t boast any games where you can build a virtual farm like you can on Facebook, doesn’t feature 200,000 videos of cute kittens playing in boxes like on YouTube, and doesn’t tend to trend #Beyonce like Twitter, it is enjoying steady growth in membership, and looking at the business case it is arguably the strongest model out there.

LinkedIn EndorsementsFor my role as co-leader of LiveWorkPlay as well as volunteer efforts with United Way Ottawa and others, LinkedIn is also becoming a favored place for me to connect with others in my field (worldwide) and for developing local partnerships. Other members of the LiveWorkPlay staff team and especially our Manager of Employment Supports are finding that LinkedIn is an increasingly useful tool for reaching out to individuals and organizations to make the business case for the employment of people with intellectual disabilities.

But it’s not all work and no play.

It is no doubt an unintended consequence, but LinkedIn endorsements have become a source of both interest and amusement for many. While it is good advice to not let any recommendation go to your head – especially one that is based on nothing but a click – it’s still useful to me to see what type of endorsements I am receiving (I do not ask for them, these have all been given through the free will of others).

As you can see from the graphic below, I have now received more than 1000 endorsements (which is very cool, I remain fascinated with odometer-style milestones) and the somewhat generic “nonprofit” and “non-profits” are at the top of the list which certainly makes sense, as do the various categories related to communications.

On the funny side, how did I get four endorsements for laughter yoga? I tried this once and believe me, I don’t deserve an endorsement. Opinions are split on the practice. I don’t think there could be anything worse than having laughter yoga gurus angry with me, so here’s an article if you want to learn more about it. If you’ve spent any time in the LiveWorkPlay work environment, you’d know we aren’t much in need of a laughter coach. Usually there’s a need for an announcement that a guest is coming so we need to stop laughing (we do a lot of very serious work and we long ago learned to balance the tears with laughter).

I also received 2 endorsements each for Humor and Jokes, and 5 endorsements for Irreverence. I admit, I did make a direct ask for those. It’s the one exception (and now the second exception, see below) to my “don’t ask” rule.

In the continuing spirit of making LinkedIn more fun, I would like to take this opportunity to make a new request. Earlier today, after responding to a call for feedback on a document sent to me by an umbrella agency in my sector (and after I pointed out that my concerns were being whitewashed) I was told that “You have much to contribute, even if it comes across as impertinent at times.”

Under the circumstances, I decided to take this as a compliment, so if you are on LinkedIn, or if you would like to join up, find me, and see what it’s all about, I invite you to please endorse me for Impertinence In The Face Of Injustice.

LinkedIn Endorsements

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The Top Five LiveWorkPlay Stories of 2013



5-rowWe asked ourselves “What were the TOP FIVE LiveWorkPlay stories of 2013?” To answer that question we used the insight statistics from our Facebook page. This is far from perfect (not every LiveWorkPlay story finds its best expression on Facebook) but we can say with confidence, the top five definitely attracted massive attention! There were a few stories we did not include. The passing of former LiveWorkPlay member Rob More was by far the most read story on our Facebook page and on LiveWorkPlay.ca and we did not include it here. That story stands alone. We also did not include stories about staff members. There were some news features about our co-leaders Julie Kingstone and Keenan Wellar (in the University of Ottawa Tabaret Magazine  and Globe and Mail Careers Section in particular) that were also heavily read, and also the announcement of the birth of baby Hannah (staff member Anthony Stratton) that had the “likes” going through the roof. This one and only photo of the staff team was also a big hit. Some stories covered by (but not about) LiveWorkPlay that attracted thousands of views included sharing the news of an award given to our good friend and social capital champion Al Condeluci in Pittsburgh, and the recent class action lawsuit settlement and apology in the legislature to victims and survivors of the Huronia, Rideau Regional, and Southwestern institutions.

Some stories from December continue to attract readership, and would likely have made our list if given more time. These include coverage of the amazing Festive Family Feast (with many sub-stories including Ontario Trillium Foundation Grant, Rob More Good Life Award, and Matt Suttie/Imperial Coffee video) and the speech given by Cooper Gage at a United Way Ottawa cabinet meeting. Cooper and his volunteer match (and LiveWorkPlay board member) Alexis Dusonchet also ranked in the top ten with readers  after their story appeared in Ottawa Metro and the story of Phil and Catherine’s match also had readers buzzing in a big way.

Our top five featured stories in no particular order are as follows:

A story during National Volunteer Week that focused on how LiveWorkPlay facilitates the development of relationships. The amazing photo with Emily and Ellyce certainly didn’t hurt. Discussing the many different types of volunteers at LiveWorkPlay and how they contribute to the lives of individuals and the community attracted a lot of interest, and was an important part of presentations to the YAI Conference and Person-Centred Practices conference.

Some reflections on the trip to Washington, D.C.  no doubt attracted visitors who wanted to view the videos and photos, but it was more the story of how members from LiveWorkPlay interacted with other travelers on this Ottawa Valley Tours trip that had people sharing the story with others. Our readers were also touched by a retelling of the encounter with a stranger who was moved by the obvious enjoyment of everyone in the group.

The Recipe for Success Charity Auction is hardly news, since it happens every year, but we had a big spike in interest about it in 2013, probably because there were a lot of newcomers who were tweeting it and posting about it on Facebook. There was also the rumour that someone had fallen through the stage and crashed into MC Sandy Sharkey. To find out if this is true or false you’d need to go to the 3:55 mark of this video.

The last two stories both took place on the evening of June 6! At the annual United Way Ottawa gala, LiveWorkPlay received a Community Builder of the Year award for Belonging to Community. It was a big moment with an amazing speech by Vaughn McKinney from The Parliament Cleaning Group who stood alongside employee Jeremy Robin and told the story of how LiveWorkPlay brought them together. Then Julie and Keenan made a few brief comments and accepted the award on behalf of the LiveWorkPlay community, who were watching the ceremony via Skype while taking part in Engines of Success!

Last but not least, the Engines of Success annual recognition banquet. This event received massive attention, not only while it was being hosted, but in the days and weeks to follow. Perhaps the many fans of The WORKS Gourmet Burger Bistro had a lot to do with all of the extra interest, as they accepted the 2013 Community Ambassador award for their efforts in promoting the employment of people with intellectual disabilities.

In conclusion, these five examples were statistically among the most popular moments, events, and stories of 2013, but they are just that: examples. What an analysis of our networks also shows is that we have a strong community of supports who are always interested in what individuals and organizations are doing to make Ottawa and the rest of the world a more inclusive place for all!

Posted in charity, disability, employment, intellectual disabilities, LiveWorkPlay | Leave a comment

From The Globe and Mail: “My Career”


GLOBE-HEADER

What is your name and title?

My name is Keenan Wellar and I am co-leader and director of communications with LiveWorkPlay, a charitable organization in Ottawa that helps the community welcome people with intellectual disabilities to live, work, and play as valued citizens. My title is co-leader because my wife, Julie Kingstone, whom I married in 2001, and I co-founded the organization in 1995 and it became our “co-career” in 1997.

What exactly do you do?

My days are extremely varied. In addition to developing communications and marketing strategies and materials (everything from print to video), I also review communications developed by others. It could be anything from a notice our volunteer co-ordinator is sending to a community newspaper to a presentation our employment supports team is working on for a conference.

In addition to media relations and appearances for LiveWorkPlay, I manage our website and social media channels, which are surprisingly extensive given the small size of our organization. Our sector is highly competitive in terms of both ideas and resources, and there are always threats and opportunities to consider. I like the challenge of responding to them.

What’s your background and education?

I have an honours BA in history and a bachelor of education from the University of Ottawa. I earned my MA in applied linguistics at Carleton University in Ottawa, where I also received a non-profit marketing certificate. Most important, I learned that I enjoy communication tasks and problem-solving.

How did you get to your position?

I went from working as a lunch room monitor to a teaching assistant in special education, and from there went on to teachers’ college. While I decided I wasn’t interested in working in a school, through my connections in education, I ended up with a full-time position in a fast-growing IT company where I spearheaded a federal government project related to disabilities and education.

I met Julie Kingstone through a mutual friend and, as a sideline to our full-time careers (she was working in palliative care), we spent a lot of time with people with disabilities and their family members, and got involved in advocacy. They liked what we were doing and urged us to do more. We got a grant from the Ontario Trillium Foundation and suddenly we found ourselves pursuing a new career path, which was really more of a calling than a job.

The early years were tough. We worked without salaries at times. From 2008-2010, we undertook a massive restructuring. It was not something we were forced to do; we did it because it was the right thing to do, and now our members are having better outcomes – and at less cost to donors and taxpayers.

What’s the best part of your job?

We have reason to celebrate every day. Someone gets their first job or apartment, or makes their first adult friend. People with intellectual disabilities are highly marginalized (75 per cent unemployment), so when we see them beat the odds, and have the privilege of helping, it just feels great. Specific to my own communications role, I get frequent messages from people who tell me that they were inspired by our website, or a video, or one or our presentations, and that they made changes as a result. Or, we might recruit a new employment partner or a new volunteer as a result of our earned reputation. That’s always a thrill for me.

What’s the worst part of your job?

Bad things can happen to good people for no reason at all. We used to support a young man named Rob More who died in the Ottawa bus/train crash tragedy. Communicating with the media about that tragedy challenged me in new ways.

What are your strengths in this role?

This job is not 9 to 5, and neither am I, so it works out well. When inspiration strikes, I like to run with it. There are certain times of year when everyone in the charitable sector needs to be able to run on fumes and deal with being pulled in many different directions. It’s not that I don’t ever get upset, but I’m usually pretty calm even in the face of really challenging situations.

What are your weaknesses?

I can be very blunt with my opinions about the choices other agencies or sector leaders are making. This is not always appreciated. Although I think I’ve dramatically improved on my diplomacy, I still earn a pretty high score on the assertiveness scale. It can be hard for me to let go of what I believe is right.

What has been your best career move?

It wasn’t easy to go through teachers’ college, which offers a clear career path, and just drop it to do something completely different. There wasn’t much of a business case for starting LiveWorkPlay; Julie and I just believed it needed to be done. It’s great when you can follow your heart.

What has been your worst career move?

It all brought me to here, which is great. I did work my way through university as an overnight security guard, and I think I’m only just now getting my internal clock back to normal. Julie and I tried out for The Amazing Race Canada, hoping we’d have a national platform to advance the LiveWorkPlay cause. We didn’t get on the show but we came close to getting hypothermia making the audition tape.

What’s your next big job goal?

I want to continue to focus outward – to have an impact on changing attitudes about people with intellectual disabilities as fully valued citizens who have the opportunity and freedom to live, work and play in the community like everybody else. This means supporting continued growth of internal leadership so that I can transition more of my time to external communications and relationships.

What’s your advice to others who might want to follow in your footsteps?

Taking an entrepreneurial spirit and channeling it into the non-profit sector can be an exciting option for those who would like their work to generate results that have a positive impact on people and communities.

Do you know an executive or leader who has an interesting career story for My Career or My Career Abroad? E-mail mycareer@globeandmail.com

Posted in careers, LiveWorkPlay | Leave a comment

This Thanksgiving: Give Thanks The United Way


turkeyMany readers of this blog are aware that I volunteer as a Focus Area Champion for United Way Ottawa. I was approached two years ago when the Focus Area Champion concept was first being assembled, and I was honored with the idea of representing the Employment of People with Disabilities priority within the Belonging To Community focus area.

I find Ottawa is one of the smallest big cities in the world, and people have long memories. Some even remember more than ten years ago when I was publicly critical of the United Way Ottawa because I felt that it was a small “closed club” of beneficiary organizations when donors could be better served by working with more agencies and with a stronger focus on solving problems than on funding agency budgets. I was far from the only person with this view – there were lots of voices inside and outside of the organization that were in agreement with the need for a change.

Well, for an agency as large as the United Way Ottawa, they’ve changed all of this at a rather amazing pace. Their ability to explain what they do, why they do it, and at what cost, is among the best of any United Way organization in North America, as was recently stated by the President of United Way Canada at Ottawa’s 2013 Annual General Meeting. Here it is:

Belonging To Community

  • Connecting people with disabilities who want to work with meaningful employment opportunities;
  • Ensuring that more seniors have the supports they need to age in their own homes;
  • Decreasing the unemployment and underemployment of immigrants and new Canadians;
  • Increasing the number of people working together to improve their own neighbourhoods.

Growing Up Great

  • Help more children enter school ready to learn, and;
  • Help more at-risk children and youth succeed

Turning Lives Around

  • Helping get homeless people off the streets through housing first initiatives;
  • Helping people with mental health and addictions issues get access to the support they need; and
  • Providing support and treatment for people and families in crisis

From time to time I still hear rumblings that “I don’t give my money to United Way because I don’t know where it is going.” Well, I have been in the charitable sector for more than 20 years, and I can tell you that it would be very difficult to find any organization that has invested more effort in communication and transparency. I realize it takes time for people to appreciate new realities no matter how well they are communicated. I’m trying to do my part to help donors, the media, and public at large understand how much things have changed and how the United Way Ottawa is now working with more than 100 community partners to solve community problems with more attention to efficiency and outcomes than ever before.

The latest interesting communications challenge is that United Way Ottawa has taken yet another big step towards improving transparency, but initially it was misunderstood as something more dramatic, rather than the simple (and positive) clarification that it is.

As you probably know, when you donate to the United Way campaign, you can give to the United Way, or to any other registered Canadian charity, or a combination of both.  So, when trying to establish a campaign goal, in the past United Way Ottawa has had to estimate how much of the total dollars raised would be redirected to other charities, and how much the United Way would have for its own priorities (and agreements it has with 100+ partner agencies to make it happen). The problem with this is that when people would see “$31 Million Raised!” they would assume that all of this money went to United Way Ottawa, when in fact, a significant portion of it was passed along to other charities.

Last year about $17 million went to United Way Ottawa and $14 million to other charities. The $17 million was actually less than needed to carry out the priority area projects and plans for the year. This was confusing to the public, because they had in their heads that a much higher figure had been raised.

So, for 2013-2014 the United Way Ottawa took the bold step of resolving this problem. They did what is obviously the right thing to do for donors and the community, and announced that the goal for United Way Ottawa priorities is $21 million. And that they would continue (as always) to accept donations for other charities and pass those funds along to them. These funds will of course be tracked, but reported separately, so as to prevent any further confusion and to improve accountability – the funds passed along to other charities can’t be evaluated by United Way Ottawa, and donors need to understand that in making that choice, the United Way role is simply to accurately transfer the funds.

I am not sure how this change has become a negative for some, all I can figure out is that they didn’t understand what it really means, and once they do, they will also come to the inescapable conclusion that this makes a great deal more sense than the past practice (common to most United Way agencies) of reporting a lump sum that clouds the ability of donors to understand what happens to their dollars.

So, this Thanksgiving weekend, consider showing your gratitude for living in a wonderful city like Ottawa by making a donation to help change lives in our community. If you really want to target your donation, as a Focus Area Champion I am fully authorized to suggest that you donate specifically to helping people with disabilities find and keep paid employment. Just enter all or part of your donation where indicated. There is a lot of unmet need in all of the priority areas and you should feel comfortable targeting the priorities that resonate most strongly for you.

Posted in charity, communications, disability, employment | Leave a comment

Road Trip II: Ottawa to New York City Manhattan Island (Plus US Open Tennis)


A few friends as well as people who are simply readers of this blog have tried and enjoyed my first post about road trips, Ottawa to North Conway. Due to the positioning of cameras at the US Open Tennis match between Milos Raonic and Richard Gasquet, large numbers of people became aware that Julie and I travel to NYC at least once a year. Those who are not the biggest tennis fans were more interested in the trip itself, and since we’ve experimented with the Ottawa-Manhattan journey in almost every conceivable fashion (planes, trains, and automobiles) I decided to share  our new favourite route, which we tried out for the first time this year.

another-winFirst, let me address most of the alternatives. You can get a direct flight, and you’ll be in the air for less than 90 minutes. It will cost you about $1000 for two people. That’s a fair chunk of change, but the real issue is it takes more like 7 hours if you are realistic about what is involved at each end of the trip. And that 6 hours or so where you are not flying through the air is going to involve a lot of stress. Further, when you do arrive at Newark, LaGuardia, or JFK, you aren’t in Manhattan yet, so you’ve still got some work to do. Sometimes it is relatively painless, and sometimes it is very painful – every NYC airport has problems getting planes in and out on time. You can end up spending a lot of time on the tarmac, and the security lines are pretty notorious. Then you’ll have to taxi or bus.

You could drive door to door. There are many challenges to this, a major one being what “door” you are arriving at. Parking in Manhattan is at a premium, wherever you are staying, you are likely going to roll up like you are strolling into the Best Western Peterborough. Don’t even count on paid parking being available. But my biggest warning about making this drive is understanding that Ottawa to the outskirts of NYC is usually no big deal, but you could in fact spend hours in the home stretch (or trying to get out on your way home). Between construction and unbelievable volume, you can end up sitting on a bridge surrounded by relentless honking (locals in particular honk their horns even when kept waiting even when there is obviously nothing anyone can do). In other words, it’s not exactly relaxing. The drive can be made in 8 hours, but the only time I’ve accomplished this was when we left Manhattan at 1:30 am after a US Open rain delayed match. Don’t bother trying to figure out when “rush our” is. Manhattan is an island and people are coming and going all the time.

You can take the train the full route – VIA Rail to Montreal, and AMTRAK from Montreal into NYC Penn Station. The problem is, this takes a very long time. The Montreal-NYC service is pretty slow (11 hours) and of course you’ve got to get to Montreal for 9am at the latest in order to catch the AMTRAK. So we are realistically talking at least 14 hours when considering the needed buffers.

Something we’ve never tried (and probably won’t, due to my very long legs) is Greyhound bus service. If you don’t drive and/or you are on a low budget, this is definitely worth a look. It’s about $200 return trip, and depending when you travel, it’s reasonably quick. The overnight is less than 10 hours – but not everyone wants to do a red eye bus trip, in which case you are looking at more like 12 hours or more. That’s a lot of time on a bus, and you don’t have the freedom to stop when you want to. But if you’ve always wanted to go NYC and flying or driving is not an option, you can do it! The bus goes to the Port Authority, not Penn Station, but it’s pretty convenient from there.

Ottawa-AlbanySo, what’s our favoured solution? Drive and train. And not just any drive, we took a scenic route through the Adirondacks to Albany, and followed it up with a scenic train ride through the Hudson River valley right into Penn Station. Another beauty of this route is crossing into the US by car at Prescott-Ogdensburg, which is typically the least painless way to travel over the worlds longest undefended border.

Here’s the route: drive south on the 416, and you’ll see the signs to continue south on to the US border (instead of going east or west on the 401). Just head to the right (west) on the 37 after the border, and then take a left down the 68. You’ll probably find yourselves alone on the road most of the time. As you make your way south through the park, the highway numbers will change but it’s very straightforward, the traffic is light, and the views continue to improve along the way.

Alternatively you can skirt the park to the west and south to get to our final car destination of the Albany-Rensselaer Amtrak station, but you will only save about 10 minutes, deal with a lot more cars, and without a doubt won’t enjoy the same quality of scenery.

About 3 hours after you’ve left Ottawa (taking our recommended route) you’ll find yourselves in the town of Tupper Lake, population 3000, and the urban hub of the area. Along Main Street as you pass through town you won’t have to divert from your route to get gas, fast food, or a sit down meal. Apparently the Irish pub is excellent. We stopped for gas across the street from there. It looked like the gas station has a pretty awesome deli going on in there, but we were concerned with making the train on time, so we kept moving.

We continue on south on the 30 until Long Lake and one of the few points of possible confusion. You are going to turn LEFT onto the 28N (something called the 28N sounds odd when you are ultimately heading south, but don’t worry, it goes east and south). You’ll travel past scenic lakes (many lovely rest stops complete with historical plaques can be found along the way) and then through thick mountainous forest. The road is of good quality and you are unlikely to experience much traffic. The exception would be traveling at night, in which case you have to watch for deer and bears.

tuppFrom the 28N the 29 and the 19 will take you to the the 87 interstate where you head south and now you are little more than an hour from the train station.

Arriving at the Albany-Rensselaer Amtrak station you’ll easily find the long-term parking, a very affordable $6 per day. Just walk towards the station and follow the painted blue line. The trip is just 2.5 hours on the train and remarkably affordable at just $40 per person – return! The station is nice and calm with basic amenities and a cafe with good coffee. It’s modern and clean. Look for a seat on the right-hand side of the train when you board, as the views are quite spectacular. You will enjoy almost non-stop access to the Hudson River. It’s quite beautiful and the many bridges and lighthouses are also interesting to look at. The train has wifi and it worked very well for us along the way. We used it to learn more about what we were seeing. There’s a lot of history.

The train will take you right into Manhattan at Penn Station. Midtown Manhattan is the busiest single commercial district in the United States, and among the most intensely used pieces of real estate in the world. You now have access to multiple public transit options (subways that go anywhere as well as the Long Island Rail Road (LIRR) which will take you to the US Open or to a Mets baseball game in 20 minutes) and of course the pedestrian options are great. Keep those elbows tucked in and keep your head up – the typical Ottawa rules about how to use a sidewalk or stairwell do NOT apply.

You probably won’t be surprised that accommodations in Manhattan are expensive. Everyone is there, it’s a supply and demand thing. And it’s not that you are being ripped-off, it is costing the hotel a lot of operate there too.

With our CAA card we were able to stay at the Best Western on 36th street (short walk from Penn) for $250 a night, which is actually quite a bargain. I won’t get into the hotel discussion, because that’s why things like Travelocity were invented. Same with food. The world is now at your doorstep, and whatever you want, whenever you want it, you can have it! Due to our schedule end up getting a lot of takeout. It’s quite a change from Ottawa where the post-midnight offerings tend to be pizza or pizza.

Although I think this car-train option ending up at Penn Station is great for anyone who wants to visit Manhattan, after 8 years of trying various arrangements, I also think it’s the best solution for attending the US Open, which is held in what is technically Flushing (Queens) but it’s really not an accessible area, other than by train or subway. There are few local accommodations that will allow you to access the tournament without some for of transportation – hotels near the area may advertise a shuttle service, but good luck with that, every guest will be trying to book it just when you want it too.

You can stay somewhere along the 7 train (subway – but mostly above ground on this line) but it’s not very comfortable and is particularly crowded at the end of the day, just when you’d rather not have your tired sweaty body crushed up against others like a Metallica mosh pit. And no, I’m not exaggerating. It’s all part of the fun, but after you’ve experienced it, you might not be craving it again and again.

The Long Island Rail Road is definitely the way to travel. Big comfortable seats with air conditioning that works beautifully, it never smells like urine, and it’s only two stops from Penn Station to Mets-Willets station (US Open). You come up the stairs and you are right there at the entrance. It’s awesome.

Attending the US Open itself is a whole different story. I know it’s impossible to appreciate from seeing it on TV. About 3/4 million (yep, 750,000!) attend this event over the course of two weeks, and it’s at times a frightening mass of humanity trying to squeeze into small courtside seating areas and stadiums. Most of the tournament doesn’t take place in the giant stadium shown on TV, and as a spectator that’s probably not where you’ll have your best memories either. In 2013 the most fun we had was in the old grandstand court (probably about 3000) and court 17 (about 2000). Depending on the schedule, you might even see a match on a court that has little more than standing room and three rows of benches – particularly if you are a doubles fan, you can easily see world class matches just a few feet from the players.

grandWe’ve tried attending week one and week two (timing and finances make attending both weeks impossible) and week one is the best for anyone but the extremely wealthy. The matches in the big stadium are almost always mismatches in week one, so you can ignore them (and not worry about getting tickets) and with a grounds pass ($70 or so) you can see 12 hours or more of tennis every day, and the atmosphere will be awesome. The week one seats in the big stadium are full of nitwits who are more interested in their $15 Grey Goose than what is going on down on the court. They talk on their cell phones and carry on conversations about international finance.

If you want to live the dream of seeing the semi-finals and finals (where even the nitwits tend to shut their pie holes), unless you are willing to drop a thousand bucks on a good seat, you’ll be up in the nosebleeds (Arthur Ashe stadium is massive) and still pay in the hundreds. It can still be an enjoyable experience of course but we’ve decided it’s more fun to experience up close the first week of how the players got to the second week, and then watch week two on TV. In week two you won’t have a lot of choices of what to watch, and you might end up putting a lot of effort into seeing action that is not all that memorable.

Mind you, if I knew for sure I’d be seeing the the Djokovic-Wawrinka semi-final 2013, I’d find a way to get a ticket!

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Hey Keenan, Did You See THAT LETTER?


By now just about everyone on the planet has seen “the letter” – the hateful letter allegedly delivered by one mother to another, suggesting among other things, the euthanizing of her son, who has autism.

letterAlthough I did attempt a few responses in various Facebook threads and newspaper comment sections, it took inspiration from Dave Hingsburger (a frequent source of inspiration for me and countless others in the disability advocacy community) to figure out more or less what I wanted to say (and commented on his blog).

Here’s the thing. To anyone who has been involved even a little in the lives of one or more persons who has an intellectual disability, that letter is not shocking. Because we’ve seen it and heard it all before.

Here’s how I responded on Dave’s blog:

Thank you so much for that Dave. I won’t lie, I’ve been refreshing your blog page knowing it was coming and you did not disappoint!

For anyone even partially involved in disability advocacy, that letter and the response to it has provoked a lot of mixed feelings. For those immersed in these issues, it’s been downright troubling – but it does present an opportunity.

Hatred directed towards people with disabilities can’t be defeated just by saying “I don’t like it” as so many people are currently doing in response to “the letter.”

It’s great that the public have shown overwhelming support, in terms of saying, correctly, that the letter is disgusting, hateful, horrific, nasty.

But if you really want to make a difference, you have to contribute to changing the conditions that make that type of hatred quite common (I recall a CACL report where about 50% of people admitted discomfort just being around a person with an intellectual disability).

Hatred can take the blatant form like “the letter”. But marginalization of people with disabilities happens mainly through our social structures that keep them separate from “the rest of us” and reinforce – if not cause – the bigotry that is actually very common, even if it might not always be so boldly and publicly expressed.

So, if you didn’t like that letter, what are you going to do about segregated (aka “special”) education, living, recreation, and vocation – all the places where the “normal” aspects of life are made different for people with disabilities (particularly people with intellectual disabilities) by separating them from everyone else?

Are you going to advocate with your employer that they hire more people with disabilities? The unemployment rate for people with intellectual disabilities is upwards of 75%. And it’s not because they don’t want to work or can’t work.

Are you going to advocate to your flag football league that they reach out to local organizations who support people with disabilities and let them know that (as your website probably says you do) you truly welcome ALL enthusiasts to join? That you’ve realized not a single person who has Down syndrome has ever joined your league and you wanted some help reaching out, making an invitation, and being welcoming?

Are you going to speak up at school board meetings in response to pro-segregationists and say “Having students with disabilities in the same class as my son won’t hurt my son, it will make him a better student and a better person?”

What will you DO about the circumstances of separation and segregation that help fuel and sustain ignorance and hatred of people with disabilities?

That, my friends, is what I think THE QUESTION should be in response to “the letter.”

And, if you do want to do something, get in touch. I’ve got ideas.

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