Advocacy in Action

I’ve never been one to keep quiet! I’m a strong believer in taking action within your community when you see areas that you think need to change. Over time I think I’ve perhaps mellowed, or perhaps I’ve learnt to be more strategic, or perhaps I’ve learnt that you attract more bees with honey than vinegar!

This month I’ve been able to act on local, provincial and federal levels, with mostly positive results. It’s not always like that, but perhaps I’m on a lucky streak!

Locally

Earlier this month I had a disappointing experience while shopping in BestBuy, which was the second time it had happened to me there. I decided to use social media to get their attention, and sent a tweet “@BestBuyCanada. Had 2nd poor customer experience in Kelowna. Would like to offer to do disability awareness training for your staff.” That got an immediate reaction and after being connected with their regional manager and the store manager, I went to the store to meet with Bruce, the manager.

My approach was education and looking to improve things in the future, not looking back at my past experience. I gave him 3 quick tips to help to provide better service to people in wheelchairs – get to the person’s eye level so you can talk to them directly; moving between multiple products can be difficult in a busy store, so use your technology (everything is on their laptops) to show examples before moving; look to help people in wheelchairs in the areas of the store where you are meant to serve yourself with products because it can be difficult to reach. Ultimately better service means more sales, a win-win situation.

Bruce was very receptive and he said he would take the three points to his full staff meeting that week. I followed it up with a positive tweet and thank you emails. The proof will be next time I go shopping there!

Provincially

Along with Sherry, our client services coordinator, we have formed a coalition of service groups in the Okanagan to lobby for better HandyDart provision. After meeting with a city councillor and with our 3 MLAs, I finally managed to get the meeting I was interested in – with BC Transit and with the representative of the City of Kelowna who speaks on behalf of the 6 municipalities that make up the Kelowna Transit Region.

The key to this meeting was research. We had our own survey and our Call to Action, with the points we wanted to make. I also spoke to Jane Dyson at the Disability Alliance BC and learnt valuable information about their relationship with TransLink in the Lower Mainland.

The meeting had an interesting start! It was scheduled for the second floor of a building with no elevator, so I couldn’t get to it! After a quick move to City Hall, the fire alarms went off. Being on the 4th floor, there was no way to evacuate me if that had been necessary. There could have been no better lesson on accessibility issues!

My hope for the meeting was that we could agree to work together on the issues. I knew there would be no quick fixes, as we need to change attitudes to achieve some goals and get extra funding to achieve others. I’m really not sure which is the more difficult. I know that a band-aid solution to each complaint that crops up isn’t the way. It needs systemic changes, and some of them can be achieve locally while others require provincial action

We came away from the meeting with plans for a collaborative committee that would meet quarterly. The pace is slow but with sustained conversations and trying to look at the big picture rather than individual problems, I’m cautiously optimistic that over time we will achieve change. Again, time will tell!

Federally

It’s no surprise that we’re in election season, so there’s no better time to try to act federally, which is certainly the most difficult way to get attention to the needs of people with MS.

The easiest way to act was to use the Vote to #endMS email set up by the MS Society, which can be found at endms.ca. It was an easy way to send an email to the candidates in my riding, and I heard back from two of them. The purpose is to put the issues in the minds of the candidates at a time when everyone else is trying to do the same thing with the issues that are important to them. One more email is one more time that the words “multiple sclerosis” are in front of them.

In the summer, our chapter had at booth at the Okanagan Pride festival. Many of the local candidates attended and it was a great way to get to talk to them. I had one question for each of them “The ADA is 25 years old. If your party is elected, how long will I have to wait to have a CDA?” It was a great way to start a conversation and to see just how tuned in to disability awareness they were – not very much, was the answer! But the plan was to plant a seed, to raise the issue, to have focus.

My latest step was to try to have a question presented at an all candidates forum so that MS would be mentioned publically. I managed to get a question on the list at the CARP senior’s debate in Kelowna by slanting it towards the special interests of the group chairing the debate. My question was:

Nearly 80% of the 100 000 people in Canada with MS find themselves unemployed, which leads to their retirement years with low income. If elected, what will your party do to assist people to cope with the ongoing financial burden of a chronic illness?

The evening didn’t quite go as planned and a few questions were squished into one. However, I sat right at the front and wore my MS Society board member badge. Our incumbent MP recognised me, mentioned me and the MS Society and specifically spoke about our HandyDart campaign. I achieved my goal of having the MS Society mentioned at a public forum and I also heard answers to a lot of questions that reflected the concerns of people with MS. It might not have been exactly the way I intended it to happen, but the exposure of the MS Society and the needs of people with MS were still there.
As long as I am able to continue to speak out, either verbally or in written word, as long as I am able to be a visible presence, I will continue to champion the rights of people with MS and supports that we need and deserve. I see my wheelchair as a “foot” – or perhaps a wheel? – in the door to start the conversation, and with focus, research and determination, and honey not vinegar, I hope to be make a positive change.

An Amazing Okanagan Grape Escape

This weekend was the ScotiaBank Okanagan Grape Escape MS Bike Tour – a mouthful of a title for an amazing event! Over 140 cyclists had to raise over $300 each to take part, but many raised much more, as our final total for the weekend was $82 667, with more to trickle in slowly, we are sure.

These cyclists get an amazing ride through the wineries of the Central Okanagan. On Saturday they visit 10 wineries on the Kelowna side of the lake and on Sunday a further 6. Each winery offers tastings and any wine purchased is brought back to the base camp for them, so they don’t have to ride along with clinking bottles! The ride on Saturday is 70km, so I’m sure the tastings help to take your mind off the pain as the day goes by.

On Saturday night we have a banquet to socialise but also to celebrate the achievements of the riders, the teams that raise the most and so on. I want to share one story.

I first met Christina in June at the first ‘Gear It Up’ event where riders get to train for the event. Christina had met some of our committee at the start of another cycling event – Kelowna’s Bike To Work Week. She shared with them that her sister-in-law has MS, so she was then convinced that she really should take part. Okay, she said, as long as you train me.

Onwards to that first training ride, a 30km ride. At the lunch at the end of the ride, Christina looked all in. I sat and talked to her for a while and reassured her that there was a short route each day too, for the actual event, if she didn’t feel up to the full 70km. I had my doubts that she would make it to the event in September!

The next time I saw her was September, the morning of the event, and she was positively bouncing with excitement. Which length are you going to do, I asked? The long one, she replied, brimming with confidence. She was also wearing the special shirt for people who had raised over $1000.

Christina had attended all 3 training rides, had lost weight, was so proud of her achievements, and, for me best of all, so proud to be doing something to support her sister-in-law. We made a special presentation to her on Saturday as the rider who had impressed us the most with their transformation over the course of the year.

This is why we do it. This makes it all worthwhile.

  

Celebrating my personal MS Week

Seven years ago this week my MS reared its ugly head. I would say “for the first time” but it’s never gone away since then…my ever present friend. On September 1st 2008 I started with odd feelings in my feet and legs and by September 4th I was in hospital, diagnosed with first, transverse myelitis, and then a day later, on September 5th, with MS.

There is no cure for MS. It is a chronic progressive disease. Why do I celebrate this week of anniversaries then? Because it gives me a chance to look back, to reflect on the ways I have faced up to this most personal of challenges and to recognise the new positives it has brought into my life that I would never have had without it.

So I choose to celebrate

– the friendships I have made, both in real life and on Facebook, and the laughter and tears we have shared. There are so many people in my life now that I would never have known. Wow.

– spending every day with Ian and our dogs. I celebrate the strength of our love through every challenge that comes our way… and how would we do it without our “assistance” dogs?!?

– speaking to my parents every day. 8 hours time difference made that impossible while I was working. Now every day my dad and I can put the footballing world to rights and my mum and I can laugh at all the daft things that happen to her … okay to both of us.

– being able to be a voice for those who deserve one, in whatever way I can. My disability gives me a platform to advocate for those who deserve support and compassion in a way that just isn’t the same from “the outside” of the issues.

– having a new knowledge thrust upon me, and being able to share it with those who are following behind me. Drugs, assistive devices, new research, people, places – the learning never stops. What does an MRI show? What is happening in my grey matter? What treatments are coming up in the next year? More questions than There are answers for!

– finding the right tool for the job. Comfy clothes for sitting in a wheelchair? Nothing better than IZ Adaptive! Amazing clothes at great prices by a Canadian designer! Can’t always speak? There’s a wonderful app by AssistiveWare for my iPad. Need to be able to transfer? You need a pole that you can hold in different places! When you find the right tool, the difference it makes to your daily life is incredible.

– being inventive! Nothing better than our own solutions. My lift that comes out onto the deck through the hobbit door! My super bathroom with my 3 foot door! Even the new grippy handles on my wheelchair, from pipe insulation and hockey tape

– the hours I spend in bed. Thank heavens for our super comfy bed, because I’m in it for about 16 hours a day! The books I read here (thank you Kobo), the blog I’m writing right now on my iPad in it, and the tears shed watching ManU. And of course the heavenly, blissful sleep. My dark, quiet cave that rescues me from the complexities of life, to charge me up and set me up for another dose of life outside the bedroom door.

– my medical team. I have a great medical team who I trust and I know who to call for each bit of me that “plays up”. It’s not easy and it doesn’t just happen by chance, but gradually the members of your team fall into place. 

– the MS Society. It is there for me in so many ways. It has given me an outlet to keep using my skill set, as much as my body will allow. It nourishes my knowledge in many areas, from the advocate in me to the daily support of people with MS in the community to the hope that through research there will be a cure one day soon.

Tonight I will have cake and I will celebrate! I will face the year ahead with determination and this time next year I will celebrate another year of challenges faced.

However, getting cake it perhaps a metaphor for the challenges of life – it took Ian 3 attempts to find a store that was open where he could buy my celebratory cake!