The Saga Continues, or Can I Have My Leg Back?

It’s been a few months since I hit my breaking point and spilled my emotional guts all over the internet.  Many things have happened since then.  The family and I went to Thailand for two weeks.  I had a moderately heated conversation with someone from Otto Bock, the manufacturer of my defunct cyborg leg.  I hit 14 years as an amputee on January 25th.  And Zeke got the croup.  I’m probably missing a few things, but that’s what’s jumping out right now.  I’m going to focus on the prosthetics for this post, but have plans for a short and sweet one page blog series starting in the near future, so if you want to know more about Zeke vs. The Croup stay tuned.

Let’s rewind a couple months.  In the two days between getting the news that Otto Bock wanted more money to “fix” my leg, and the time it took me to write and post my letter to the prosthetics industry, I was consumed with fear, rage, anxiety, sadness and feelings of inadequacy.  Millissa, being Millissa, kept saying “you need to write, you need to get this out of you and release it”.  Then a magical thing happened, Mill and Zeke both went to bed at eight o’clock one night and I was left with the computer staring at me asking “are you going to do this or not?”  I sat down and didn’t look up for the next few hours.  When I stopped, the letter was done, that was it, it had written itself.  I can’t think of writing with such fervour at any other point in my life.

Friday morning I put the letter out into the world and I continued struggling to focus on anything else for the next few weeks.  As much as I had released it, I had also opened a can of worms, a can of worms that I like to keep to myself.  After all I can’t let my insecurities about being an amputee leak into the world, then people might think I’m weak (that’s a joke, just to be clear).  Honestly that’s where I often live though, doing my best to act like the fact that I am an amputee has no effect on me, even as I know hiding everything is a much bigger weakness than sharing my vulnerabilities.  Maybe it’s hitting 14 years as an amputee that’s leading me to be more honest with myself about what it means to live with a physical disability.  This topic is a book on it’s own, so back to the matter at hand.

The hardest part, was that not much changed after I posted my letter, I was still ridden with anxiety, frustration and anger about the whole situation.  Slowly I began to go into self preservation mode, I couldn’t talk about what was happening without my heart beginning to pound through my chest in a matter of seconds.  So I stopped talking about it, I did everything I could not to think about it.  I needed to let things work their way through my subconscious, so I could consciously be with them without my blood pressure going through the roof. 

One thing I did do in that time was have a conversation with a customer service representative from Otto Bock.  After all I did post the letter on their social media channels, so they were aware of it.  I went into this conversation with every intention of keeping my cool and hearing what the rep had to say.  I managed to do this until this person referred to amputees as a, and I quote “niche market” and tried to tell me Otto Bock makes products not replacement body parts.  I couldn’t really keep it together at that point.  I am not part of a niche market, I am not a number, and I am not ok being referred to as one.  I am a person, I am a cancer survivor, I am an amputee, I am someone who uses a prosthetic to replace as much functionality from the loss of my leg as possible, I am a husband, I am a father, I am a friend, I am a son, I am a brother, I am a dedicated and passionate employee, I am a musician, I am creative, I am an athlete.  Those are all things that I am, but if there is one thing I am not, it is a member of a  “Niche Market” as a consequence of having cancer and losing my leg.  To say I find that offensive and disrespectful is a massive understatement.  Needless to say the Otto Bock rep didn’t really have anything to say to this, to his credit though he did hear me out and acknowledged Otto Bock needs to do better in engaging with the amputees who use their prosthetics, notice I didn’t say products!!!!!!

To be honest, I left that conversation as much or more frustrated than I was prior to having it.  During our conversation I repeatedly pointed out that I didn’t think it was right, or fair in any way for Otto Bock to charge me for any further repairs, considering that none of the prior repairs had held up for more than a couple months, if not a couple days.  Again, to the reps credit, he agreed.  Things were left with the rep agreeing to talk to his techs and see what Otto Bock could do to reduce the cost of the repairs.

I wasn’t very optimistic at that point, but my prosthetist continued to communicate with Otto Bock and eventually they came back saying they would cover all the repairs except the specialized pylon that runs from the end of the knee to the ankle/foot.  Due to the advanced nature of this knee joint, it also has a highly advanced pylon that costs around six thousand dollars.  This part made up the vast majority of my bill, but my prosthetist was able to source a spare one of these for free.  I don’t have the leg back yet, and honestly whatever further use I get out of it will be a bonus as far as I’m concerned, but the whole thing should be back to me and up and running in the next couple of weeks.     

So hopefully ends this part of the saga.  The other piece that is still there and will be an ongoing battle is the lack of coverage for amputees in BC and really across many parts of Canada.  Every prosthetist, and amputee I’ve met seems completely unhappy with the amount of coverage in BC, as well as the way that coverage is distributed.  As I mentioned in my last blog, I work in Community Living/Social Services for people with diverse abilities.  I love what I do, I am passionate about it, but nobody is in Social Services for the money, myself included.  Yet, I am still faced with an almost $2,000 a year copay for my prosthetic coverage in BC, affording that is a stretch to say the least.  That is also essentially a $2,000 bill for no other reason than the fact that I have a physical disability.  I don’t know how to experience this as anything other than discrimination based on having a disability.  On top of that BC doesn’t provide any coverage for computerized prosthetics or prosthetics purchased in another province.  I wonder if BC provides coverage for living limbs that were born in a different province?  Or if you need surgery on your actual leg, but you already had surgery on it when you lived in a different province, are you banned from having it operated on in BC?  Ok, you can see the hypocrisy here. 

I believe things are pretty cut and dry at this point in history, as far as I know any form of discrimination is illegal, let alone discrimination based on any type of disability.  Yet, here we have that exact thing existing in BC and not only that, it exists as part of an official government program?  Can someone remind me what year it is?  Can someone tell me how not to be outraged by this, not just for myself, but for all sane and caring citizens of BC?  I’m not a complete fool though, I recognize that discrimination, racism, and all kinds of horrible things have and are currently running rampant in the world.  We need to do better for so many people, PERIOD.

I hope to see the prosthetics coverage in BC broadened and improved, I hope to be a part of that change, but I’m not sure how to go about it, or where to start.  There’s also the question of energy and time; on top of work, supporting my family and trying to take care of myself, do I have the time and energy to build a movement to advocate for better prosthetic coverage in BC?  I believe I do, but I also know I’m going to need a lot of help and a lot of time.  And like I mentioned earlier, I can’t do this at the cost of my sanity, I can’t do that to myself or my family.  So I’m taking my time, doing what feels right, and telling my story to anyone that will listen.  The fact is most people don’t know how lacking the coverage is here, and when they find out they are appalled.  I recently heard a quote from Al Etmanski, a community organizer and social entrepreneur here in BC, he said “cultural receptivity precedes political receptivity”.  Meaning cultures and societies are ready for change before governments and politicians ever do their part in creating said change.  I believe we are cultural ready to do so much better for people living with all types of disabilities, and it is time for us to start ramping up the pressure on governments to do their part in creating a truly equal world.

From Support Work to Research and Development: An Unexpected Career

Way back in the distant past of 2009, in the far away land of Madison, Wisconsin I took my first job in a group home in.  I had completed my bachelors in psychology and as is the case with many bachelor's degrees, there wasn’t a job waiting for me when I graduated, so I took the plunge into Community Living (this is the overarching term for all services for people with diverse abilities).  I thought it would be a stop-gap between grad school or another career. It’s been ten years and I’m still here.

That first group home gave me a crash course in some of the realities of working frontline in Community Living.  I observed other support workers sleeping on the job, doing their laundry at the house, making large batches of fried chicken in the middle of the night and exhibiting a general disregard for the fact that, though this was their workplace, it was also someone’s home.  I quickly gained the trust of the individuals who lived there, as I did my best to treat them with dignity and respect. I’m not going to lie, I was happy with myself and felt like I was doing good. At the same time I had the creeping feeling that, while I was undoubtedly providing some form of quality support, things out of my control didn’t allow for much in the way of meaningful experiences for these individuals.  

I carried on in the field and this feeling followed me everywhere I went.  From a day program in Portland, Oregon, to another group home in Saskatoon, Saskatchewan and beyond.  Prior to my time at posAbilities (where I currently work in Vancouver) I remember facilitating exercises in “folding and sorting” and spending more time than I imagined possible hanging out in food courts, one of only a few places you can be for free, that also happens to have tables and chairs.  I’ve been told things like, “this person goes to McDonalds every Friday evening, it’s their favourite restaurant, they’ve been going every Friday for 20 years”. Now, I’m sure this individual enjoyed going to McDonalds, but I’m also certain there are countless other restaurants and times to go to eat besides Friday evening.  I would hazard to guess that this individual would have enjoyed a meal at, somewhere other than McDonalds, on say a Wednesday at noon? These experiences do not appear to be the exception though, they appear to be the norm. I’ve observed and been a part of many meaningless/repeat activities with little to no forethought into simple questions like “does the individual want to actually do this, or do they derive any joy and meaning from doing this?”  

I tried answering these questions and coming up with ways to address these issues on my own.  I managed group homes and day programs and I think, more so than create new meaningful experiences, I did my best to use humor to bring a little more joy and hopefully meaning into whatever I was required to do. This worked to an extent, but again, I was left with that nagging question?  Is this really changing anything, is this really making anything better?

I grew to believe there are many good people working in Community Living, but like myself we are all absorbed in a system that cares much more about safety and following procedures than providing avenues for individuals to lead dignified and meaningful lives.  I’ve been ready to jump ship multiple times, ready to say “I can’t do this anymore, I can’t push someone through another meaningless day!” but one way or another I couldn’t bring myself to do it. The people I’ve worked with over the years have kept me coming back, there really are so many amazing people, both workers and individuals, in Community Living that I just couldn’t stay away.  Well at least not for any prolonged amount of time.

So after nine years of working in Community Living, when I received an invite to a “Lunch & Learn” about a research and development project taking place within posAbilities, I about jumped out of my seat.  Well, actually it barely made a blip on my radar, I went to the next email and carried on. In my ten years of working in Community Living, I have been Mandt certified on a yearly basis and completed Person Centred Planning trainings multiple times, among many other things, but never have the words “research and development” been even spoken in my presence.  It was so out of the ordinary, it barely even caught my attention.  Still, one way or another the contents of that email lodged themselves in the back of my brain, seeped to the forefront of my thoughts and boom, it clicked.  “Research and Development in Community Living” I thought, “never heard of that, better check it out”.

I went to the lunch and learn, joined the project and eagerly dove in.  A team of Embedded Researchers, myself included, completed numerous hours of interviews and observation at four different programs throughout posAbilities.  We attempted to do some research with our Persons Served and had limited success (how to properly and rigorously do this I’m convinced is a project in and of itself).  We shared our findings with the programs we completed research in and did our best to keep the agency as a whole informed of what we were upto. We had many ups and downs and many more moments of confusion than clarity.  We didn’t always get it right and caused a bit of a ruckus here and there, but even as we stumbled, we carried forward. We’ll be the first to acknowledge change isn’t easy and while we strive to be champions of it, we are not in favour of running over what currently exists in a race to get to what is next.    

When the research was completed we used our findings to inform our development process.  We spent days upon days coming up with ideas, tweaking them, throwing them out and coming up with new ones again and again.  All the time doing our best to keep in mind what we had learned from our research. After all, what is the point of research if you don’t learn from it and apply it to future endeavours?

Personally, I went from being completely impassioned about the project, to wanting to bow out, back to being an adamant supporter of research and development within Social Services.   In my opinion, what has and currently exists in the world of Community Living, is just a small sample of what is possible and if we are going to create new possibilities within Community Living we need new methods.  I believe in the potential of Social R and D as one of those methods. As a means to push boundaries and create space for Persons Served to bring more meaning and agency into their lives, however they see fit. And yet, this isn’t a question unique to our Persons Served, this a question for everyone; what do you do to give meaning to your life?  For me, participating in Social R and D increases the meaning I feel in my life. The funny thing is, one of the main reasons it does so is because of the potential it has to hopefully enable others to bring meaning into their own lives. It seems that is why many of us stick to Community Living though, now we just have to spread the meaning around a little further.