An adventure with the power chair

Posted by Karen - June 10th, 2018

For some time now, my daughter Miranda has been hungering for more independence. She is 13, and at this age, her friends have all started going places and doing things without parents in tow. However, due to the frustrating limits caused by fibrodysplasia ossificans progressiva (FOP), this has been more difficult for Miranda… With fused shoulders, elbows, and her entire left leg, her walking endurance is minimal and she has had to use a manual wheelchair for anything other than traveling a short distance. The manual chair is limiting and doesn’t give much freedom, though is better than nothing. However, things changed recently when Miranda finally received her power wheelchair. The motorized chair gives her the ability to safely move about where she wants to, without needing someone to manually push her.


Right from the word go, the power chair has promised to be a game changer. Miranda realized this early on, and like a shark scenting blood, she moved in for the kill and announced that she would be starting to go ANYWHERE SHE WANTS TO VIA PUBLIC TRANSIT. Including, you know, to the mall on a Friday night without even any friends, if none of them were free to come along. Riiiiiight… Needless to say, my husband and I had to sit down with M and have a discussion about progressing gradually, bit by bit. The first step, of course, is that we needed to make sure Miranda would know what to expect when taking the bus and Skytrain (our local rapid transit system).

I planned a trip for Miranda and me to go first by bus to the local Skytrain station, and then on Skytrain for several stops, and then at the other end, we had to walk (and roll in wheelchair) for about 10 minutes to get to our destination. The first thing I learned – which I didn’t actually know before, not being a frequent transit user – was that all Vancouver municipal transit modalities are wheelchair accessible. Yay, that’s good! Still, though accessible, that doesn’t mean there aren’t some challenges in making it work.

When the bus arrived at our stop, the driver saw us and duly lowered the wheelchair access ramp. However, the ramp was lowered so that the end of the ramp was just about across the whole width of the sidewalk, which required Miranda to back off the sidewalk and onto a patch of grass, and then turn to roll onto the ramp. Hmm… That turned out to be easier said than done – when the power chair got onto the grass, the wheels started to just ineffectually spin, as there wasn’t sufficient traction to keep moving forward. For one panicky moment, we thought the chair was actually stuck on the grass! But, luckily with a bit of effort Miranda was able to roll the chair back onto the sidewalk by going a different direction. At that point, the driver volunteered to retract the ramp and drive forward and somewhat away from the sidewalk so that when he extended the ramp, the end was much closer to the curb. This worked better, and Miranda was able to move the chair onto the bus.

Once on the bus, however, the fun didn’t stop… There were two wheelchair “docking points”, one of which was occupied by a woman with a baby in a stroller. Miranda had to try and angle her chair into the other spot, but since her legs stick out due to being unable to bend downward at the knee, she needs a big turning radius, and she started bumping into various parts of the bus (provoking many alarmed calls and shouts from me, LOL). Finally, in the end, we figured out that she just couldn’t fit her chair in that spot, since a bus pole partially blocked her access. Okee dokee then. At that point, the bus driver asked the woman with the stroller to back out and change sides, and she graciously did so. Finally, Miranda was able to maneuver her chair into position, and the driver secured the docking straps to the chair.

Entire time required to load the bus – about 10 minutes. Yikes. First lessons for Miranda? #1 – Always make sure the bus ramp is at the near edge of the sidewalk, and if it isn’t, then politely ask the bus driver to move forward and re-deploy the ramp in a more efficacious way. #2 – Miranda and her power chair will not fit if there is a bus pole required to move behind. Finally, #3 – I noted that the bus driver needed to be instructed as to what parts of the chair to attach the safety straps to.

Getting off the bus at the other end was pretty uneventful, and then it was on to the Skytrain.

At the Skytrain station, the next lesson to learn turned out to be #4 – there may be more than one elevator, and that if you get on the wrong one, it may not take you to the correct Skytrain platform. Indeed, we initially took the wrong elevator and had to turn around and go back down and find the correct one.

Getting on the Skytrain was easy, but getting off was a bit of a challenge… The doors almost closed before Miranda could back her chair off the train, and had to be forcibly held open by me. Hoo boy! OK, lesson #5 was that upon boarding the train, it would be best if possible for Miranda to turn around so that her chair is facing the doors, thereby enabling her to roll forward to exit. Of course, doing a switcheroo like that is do-able if the train isn’t crowded, but may prove difficult or impossible at busy times. At very least, M should make sure she is close to the Skytrain doors as she gets close to her destination.

We finally finished the transit ride, but the discoveries weren’t over yet. Lesson #6 – since Miranda can’t turn her head to look for oncoming traffic, she needs to make extra care to turn her whole chair both directions before crossing so as to make sure the way is clear. Certainly wouldn’t do to be shellacked by a motor vehicle while crossing the road.

In the end, the trip was successful – and also valuable, in terms of illustrating to my intrepid daughter that venturing out on public transit in a power wheelchair was going to require some practice. Miranda did, after this experience, grudgingly admit that taking a few trips out with her embarrassing parents would be a good idea before heading off on her own.

I’m happy to report that since this occasion, Miranda has gradually progressed in her ability to use public transit. She and some friends have gone out (sans parents) a couple of times taking Skytrain to get to the mall, and Miranda also had a second, more smoothly proceeding bus trip with me present. In the not too distant future, we will be allowing M to take the city bus alone from school to the mall, where she will meet up with her brother and the two of them will take Skytrain and bus to get home.

It’s all coming together. Freedom is in sight.


PS – I expect and hope to soon announce the kick-off of our 2018 summer Walk for FOP fundraiser. Stay tuned!



3 Responses to “An adventure with the power chair”

  1. margaret holzer says:

    things do take time esp w limitations of FOP but I am elated for M and her freedom w first power chair…I remember clearly how it felt.

  2. Karen says:

    Thanks Margy! She certainly seems to be enjoying it.

  3. Antholkeymn says:

    Researchers at the University of Oxford were instrumental in the discovery of the gene responsible for FOP in 2006. Professor Matthew Brown, a geneticist at Oxford, collaborated with Professor Jim Triffit, a member of the FOP team, to investigate the genetic linkage between families with inherited cases of FOP. This allowed the Oxford team to map the precise location of the FOP gene on the human chromosomes. The gene, a BMP receptor termed ACVR1, was mapped to chromosome 2 and more precisely to a small region between bands 23-24. The current University of Oxford FOP Research Team, established in 2009, is led by Professor Jim Triffit and Alex Bullock. The team needs ?120,000 per annum to fund the work of two post-doctoral scientists. Donations from FOP Friends accounts for around 70% of the total needed.

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