I Won’t Back Down

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Article by Mike Scott Nemesvary / Photos by Mary Anne McPhee

It was with a huge smile on my face and cruising around giddy and filled with anticipation reminiscent of my teenage years, when this past spring I saw the Ottawa Bluesfest Twitter announcement that Tom Petty and the Heartbreakers would be headlining our outdoor summer concert series. For the rest of the day melodies from his many iconic hits such as “Learning to Fly”, “Free Fallin”, “Runnin Down a Dream”, “I Won’t Back Down” and “You Don’t Know How It Feels” intoxicated my mind.  Not to miss out on this once in a lifetime opportunity to see one of my favourite rockin rollers here in my own backyard, I immediately went to the Bluesfest website and preordered General Admission day passes for me and my partner Mary Anne.  Admittedly, I have always been an avid music lover rarely without the tunes on in my office, throughout the house, in the truck or connected to my headphones 8-12 hours per day.  I am proud to say over 45 years I have amassed a reasonably large and eclectic library of albums and playlists ranging from classic/contemporary rock, blues and reggae to jazz and classical.      

As a result of fall on my trampoline in 1985 I sustained a permanent spinal cord injury (SCI) breaking my neck at cervical C-4/5 (Complete) rendering me a high level quadriplegic, paralyzed in all four limbs and losing much of my cherished physicality, independence and freedom.  Despite the devastation this accident caused, I was determined to live my life to the fullest and with a positive attitude including support from family and friends, I started to rebuild my world focusing on what I was still Able to do verses what I was Unable to do.  Over the past 3 decades I have worked as a tireless disability activist, founded one of the world’s leading spinal cord injury charities The Back Up Trust https://www.backuptrust.org.uk/about-us/our-story ,indulged my passion for numerous adventures and sports and even drove my modified 4 X 4 truck around the world as a very successful international awareness and fundraiser project http://www.roundtheworldchallenge.com You could say I’m persistently”Rollin Down a Dream, eh!         

To ease my mind and elevate my comfort level, I visited and revisited the Bluesfest website to try and wrap my head around their Accessibility Policy and provisions for people with special needs.  The festival is sanctioned and sponsored by the City of Ottawa and must abide by our provincial Accessibility for Ontarians with Disabilities Act (AODA) http://www.aoda.ca/.   However, it was ironic how little detail there was generally addressing accessibility and special needs issues and specifically on how to plan ahead to locate/secure safe, adequate and equitable seating areas.  Their policy is prefaced as follows: The Ottawa Bluesfest is committed to providing accessible customer service to people with disabilities; in a manner that respects their dignity, independence, integration and that is equitable in relation to the broader public. The festival permits people with disabilities to use assistive devices, service animals and/or support personnel. The festival has established an Accessibility volunteer team (A-Team) who provide support and feedback to continually improve the accessibility of the event. A-Team volunteers will be roaming the site to offer support, and stationed in the A-Team Tent (near the Info Booth) to offer guidance and light support as needed. http://www.ottawabluesfest.ca/accessibility-policy/

Unfortunately, as my past 32 years of living with a disability would indicate, what organization’s say verses what they actually do often defies basic logic.  Case in point; while the organizers listed the phone number of their Director of Operations for customers to provide feedback on how Bluesfest provides goods and services to people with disabilities (PWD’s) there was no obvious contact information on who to call for the many other queries honouring their commitment to accommodating people with special needs.  Being proactive I called their general inquiry number which no one answered and after repeated VM messages I got frustrated and gave up trying to connect with a human voice.  My various concerns centered on vital matters such as navigating the large crowds in my power wheelchair, the location of all designated accessible seating areas and of course availability of larger, accessible washroom facilities.    

With all of the unprecedented rainfall throughout the spring and into early summer here in the nation’s capital it was challenging to remain optimistic and feel confident that summer would ever arrive or that the sun would eventually make an appearance.  But, sure enough just as Bluesfest kicked off in the second week of July we had our first sustained warm patch which brightened up all of us Ottawans and helped to energize the vibe around the music festival.  We woke up Sunday morning July 16th to a glorious day with plenty of sun and warmth excited to attend our long awaited Tom Petty’s 40th anniversary tour concert.  Since I was likely to consume a few “alcoholic beverages” we planned ahead opting to a take a Para Transpo bus to and from the venue at Labretton Flats. 

Everything was aligning for us as luckily our Para Transpo driver was a longtime Romanian friend named Soren.  We had a great ride into Ottawa chatting up a storm, sharing many laughs and when we arrived at the venue’s back gate he hugged me and said “Mikey, I am retiring after driving for Para for more than 35 years … it was great to see you … I love you man”!    

Our uplifting drive and optimistic mood slowly dissipated when we were forced to wait more than 20 minutes in sweltering heat outside the crowded and noisy rear gate entrance for an onsite Accessibility Representative to escort us to the main stage area. Right from the get go, the Bluesfest Rep was not overly friendly and appeared disinterested in discussing my special needs. When I tried open up a dialogue she would continuously look away while texting on her phone and seemingly just ignored me as we clawed our way through the throngs of TP fans.  Most patronizing (a common occurrence) was that when she did communicate, it was directly to my partner and I started to feel even more uncomfortable and alienated. When I requested to stop and get some beverages before the show started she looked disgruntled and in a stern matter-of-fact tone said “no, or you’re on your own from here”!  Some 20 minutes later we finally arrived at the designated raised disabled seating platform only to be informed that there was no space left to accommodate us and that we would have no other option except to join the other 40k plus mainly able bodied fans scattered out across the lawn in front of the main stage.  Lamentably, I’m a 6’ tall man sitting at 4’ 2” and the best view I would have from the ground level would be the backsides of all the fans standing up and swaying to the music.

Not being one to take “no” for an answer I implored the rep to check in with her colleagues to see if any of the other patrons with disabilities and using a multitude of mobility devices could move around a little so we could make an additional space or two for me and my partner.  Sure enough my perseverance paid off as my fellow attendees managed to shift around enough so we could settle in on the second row.  As I got situated and took in my surroundings I was baffled and then angered that whoever planned this particular designated accessible platform which I named the “Crip Zone” (my often dark and self-deprecating sense of humour) since we are isolated, squeezed tightly together and cannot leave easily once we’re in our allocated spot (akin to a crypt).  Most disheartening was that the entire structure was situated at a far distance away and off to the right hand side of the main stage at such an extreme angle that we had to turn our backs, necks and heads often feeling kinks throughout my body from straining to see the band.  Of some consolation was that the large screens on both sides of the stage allowed us to glimpse some close up shots of the stage, Tom and his band members.  The problem with setting any kind of staging at such a sharp angle is that the people with special needs like me are already anatomically disadvantaged and are unable to easily turn our bodies from side-to-side while sustaining these uncomfortable positions for an extended time.  Of course, some PWD’s even have a more challenging life because they do not have the ability to voluntarily control and move their bodies or mobility devices.  Subjecting us to these kind of uncomfortable seating environments often results in exacerbating pain and muscle spasms and makes it a major challenge to just sit back and enjoy the show. 

In a recent Statistics Canada – Participation and Activity Limitation Survey (PALS) some 30% of our population have identified that they live with some type of disability (congenital and/or acquired; visual and/or non-visual) and that number is rapidly increasing due to our aging demographics. http://www.statcan.gc.ca/eng/survey/household/participation/participation Surprisingly, the organizers had not taken into account the changing demographics or had the foresight to accommodate the ever increasing large segment of our community who have special needs by building only one platform for the main stage that accommodated approximately 45 people (conservative estimate) using mobility devices.  Out of a 40K audience this was obviously not of a sufficient size to accommodate those who most needed to access this important space.  Apparently we do have priority to the Grand Club VIP areas at each stage but I was quickly informed there was no space for us … so much for the part of the festival policy that respects our dignity, independence, integration and equity.         

If the festival promoters in Ottawa and indeed around the world would spend a day in our seats then they might just get a glimpse into some of our daily life challenges and perhaps plan ahead by accordingly erecting accessible structures that ensure the entertainment is just as enjoyable and equitable for people with special needs as it is for the able bodied population.  In fact I would go one further by suggesting that we revisit this whole issue and take the initiative to elevate the status of people with disabilities by having multiple designated platforms around concert venues including in the front and center row position which would send a much needed message that we really care about and respect those who are amongst the most vulnerable and marginalized individuals in our society.       

Of course all of this flies in the face of what many of our leadership and politicians espouse.  Hence, our Worship Mayor Jim Watson has gone on record stating that he envisions Ottawa as the most accessible capitol city in the world … wow, a big goal but somewhat naïve and unrealistic.  The fact of the matter is we are not even the most accessible city in North America; that title belongs to Washington DC mainly by virtue of their broad sweeping federal accessibility legislation enacted in the 80’s called the Americans with Disabilities Act (ADA).  https://www.ada.gov/.  If Ottawa, our nations’ capitol wants to get serious about making our country Great and Equal for everyone, then it’s about time the Hon. Prime Minister Justin Trudeau and his Minister of Sport and Persons With Disabilities the Hon. Carla Qualtrough immediately introduce a new federal bill entitled the Canadians with Disabilities Act. http://www.pm.gc.ca/eng/minister/honourable-carla-qualtrough  Although there has been much interest and debate about this kind of legislation for years within the disabled community, there has been little will or initiative to move forward.  Perhaps given that Justin’s father was the architect of our Canadian Charter of Rights and Freedom https://lop.parl.ca/About/Parliament/Education/ourcountryourparliament/html_booklet/canadian-charter-rights-and-freedoms-e.html,where we all have the same equal rights to be treated with dignity and respect regardless of age, gender, race, religion, sexual orientation and yes, disability! But this is an ongoing story that will hopefully unfold positively in my lifetime.  In the meantime, while our rights are getting trampled upon, I’m just getting older, more frustrated and just plain angry.  It often feels like as a PWD I’m living in 1st world country with a 3rd world attitude … I hear TP whispering Yer So Bad but, ain’t that the truth Tom.    

More often than not, many of the aforementioned systemic issues are a byproduct of our society’s archaic and stereotypical views of people with disabilities.  We are seen as vagrants, shut ins and patients rather than gainfully employed, upwardly mobile and driven individuals with the same values, hopes and aspirations as any other Canadian. We are consumers with disposable income and we will spend our money on goods, services and yes, on entertainment that is accessible and where we feel most welcomed and respected.  As money does not discriminate, there is a win/win opportunity for all the economy to prosper by including the 30% of our population who have traditionally been over looked, underserved and excluded.        

Alas, as an optimist I always try to look at the positive take aways and despite all of the challenges in getting to the concert and the many discomforts we endured at the venue, Tom Petty and his Heart Breakers put on a highly energized and memorable show from start to finish.  It was great to have an evening out with my sweetheart, listening live to some of our favourite rock songs on such a warm and clear summer night to boot …. strike another one off the bucket list. 

As a relentless disability activist and human rights crusader who firmly believes in equally for everyone, including people with special needs, until we live in a world that is 100% accessible, “I won’t back down”!

Mike Nemesvary is formerly a legendary World Champion Freestyle skier and a lifelong international human rights crusader, disability activist and global spokesperson. His company, Mike Nemesvary and Associates is committed to bringing powerful, passionate, purposeful productions to the world.  He has recently joined the team at Ottawa Life Magazine as our DisAbility Adviser and a regular contributor.