[tracy-odell]

In my 20’s, I could type up to 100 wpm, both hands, all fingers flying. I use a PC. Over time as my physical abilities changed, I made use of macros and cut & paste and shortcuts to save keystrokes. At 30, I got Dragon Naturally Speaking so I could type longer passages without my fingers giving out. Typing by hand was possible in short bursts, and with 9, then 8 fingers in my 40’s. I depended more on Dragon, but found it frustrating since it often misunderstood me and had to be corrected to make sure the recognition didn’t deteriorate. I tried a mini-keyboard in my mid-50’s, but it didn’t work well for me. Now at 60, I use an onscreen keyboard for shorter things, and Dragon for longer ones. I miss “voice-o’s” quite often. Not perfect but that’s what works (for now).

[tracy-odell]

Hello Izzy,

I would like to learn more about the causes that you are involved with. Are they disability related advocacy or based on other interests?

I am in Canada and am active with a provincial organization working to advance the rights of people with all sorts of disabilities http://www.cwdo.org.

[tracy-odell]

I just realized I wrote, “If my arm “falls” off my arm last” instead of “If my arm “falls” off my armrest” (thanks Dragon) but I’m glad you realized what I meant. In response to Ryan’s question about how I manage having a caregiver on-call:

In Canada, we use the term “attendant” rather than caregiver consistent with our history of advocating for services in the community that were separate and distinct from health services. In the late 1970s, we were able to persuade the Ontario government to put community-based support services in place for people with physical disabilities who could direct their own services. (Not medicalized, so not hospital controlled).

Other provinces do things their own way, but in Ontario today, these services have evolved into several types of delivery.  I use one type called “direct funding” which allows me to hire my own attendants. I have to do all the administration relating to that, but it also includes being able to set what their job description looks like when working for me. For this reason, we are referred to as “self-managers.”

Some people make on-call arrangements with their attendants that works for them. Others might have a live-in arrangement.

All my attendants live out and work for discrete periods of time on a schedule I set for myself. Each of us negotiates our funding based on need. Typically, a self-manager might have between one and four hours of service each day. If a person is on a ventilator, is unable to move their hands independently, then quite a bit of additional time can be negotiated, up to 24 hours if living alone.

In my case, I have scheduled my attendants for four times per day – getting up, midday including lunch, dinner and bedtime. This gives me 8.5 hours per day which is incredibly generous, even by Ontario’s standards. Three nights a week I have someone stay overnight so my husband can catch up on his sleep because I do need assistance during the night, now.

During the times where my attendants are here, I am actively involved with directing my services, overseeing things they might be doing at my home, maybe going out to appointments or to shop, etc. if I just need housekeeping or some cooking done, I might be able to do my own thing if they are comfortable to do these tasks without me by their side.

After I move into the same building as my sister next year, we plan to pool our resources and hire attendants who will work with both of us. That will give us the benefit of having someone around almost all the time on-call but at the same time each of us having times where we can be doing our own thing.

My sister and I have yet to work out details of how this might work. So if we are getting up at the same time, for instance, we would have two people working at the same time (one for each of us). But once we were up and about, we could share service with one person, making arrangements for a second attendant if one of us had an appointment elsewhere. We think this may give us more flexibility and make it easier to find attendants since the hours will be more attractive.

[tracy-odell]

I have SMA type II and just retired last year at age 60! (Quite a milestone when your parents were told you would not live past the age of 12!) My husband will be working for a few years, still, and I share the paranoia about being home alone for hours on end.

If my arm “falls” off my arm last, I am unable to reach a switch to change my position. I always keep a phone within reach after one of my attendants had a stroke in the middle of my booking before passing me my phone. What are the chances of that?! The older I get, the more experience I have with things that can go wrong, so I must admit I’m not entirely comfortable being by myself.

I like having someone available during the day, but not always being actively involved in doing some activity where I am required to direct my care. It is nice to have quiet time to do my own thing. Ideally, there would be somebody on-call in case I need them.

In Ontario, we have a program called “Direct Funding” by which you can hire your own attendants and the cost for this is covered under the Ministry of Health. It also includes wraparound expenses like having a bookkeeper to help prepare financial reports. Direct Funding provides about 3-6 hours per day of service on average, so that doesn’t go very far if you are home all day.

After I retired, I received some additional funding to provide some extended hours in the middle of the day, which leaves a three-hour gap in the morning and a three-hour gap in the afternoon.

My older sister has the same disability and she has just retired. It is our plan to move into a building where we will each have our own condo, but can pool our direct funding to have additional coverage during the daytime hours. We will see how this works out!

[tracy-odell]

What a great article! It takes me back to when I was Keyrin’s age and having the very same thoughts. I limited myself until I met a very outgoing person who helped me realize that I did not have to apologize for having a disability. She was happy to have me as her friend, her work colleague, and community badass advocate. It was a real turning point for me. Kudos for putting yourself out there!

[tracy-odell]

Glad you meet you. I’m new to this forum. My first full-time job was absolutely amazing. I was given a lot of autonomy. At one point, my job involved going all across Canada to help set up literacy programs. I was young enough that I was unaware of all the things that could possibly go wrong – and when things did go wrong – it turned into a positive.

So, for example, one time I flew from my home base in Toronto to Vancouver, B.C. When I got there I found out something had broken on my chair during the flight which prevented it from being charged. I was going to be there for a week and I knew I could not go that long without a charge. So going to the phone book (yes, this was before the Internet) I found a wheelchair repair place and when I explained what the problem was, they agreed to see me right away. And then because I was a visitor to their fair province, they refused to charge me for the repairs. At the same time, they did a workaround so that even when my chair was plugged in to be charging, I could still drive it a little bit which was very helpful. Normally when you are “plugged in” you are also locked in place.

I am no longer able to fly. I now find it far too painful to be lifted into the seat and I am too anxious about the possibility of my high-tech electric wheelchair being broken in transit or lost altogether. I have been supporting the work of All Wheels Up – a group that is lobbying for people to be able to fly while remaining in their own wheelchairs in the cabin of the aircraft. In Canada, our transportation regulations are under review and it has given many Canadians an opportunity to write the Prime Minister to change the regulations governing domestic air carriers to make flying a possibility for people like me who cannot be separated from their wheelchairs while travelling.

Has anybody else had experience flying? Would being able to fly in your own chairs make travelling more possible for you? Are you involved with the work of All Wheels Up?

 

[tracy-odell]

I’m Tracy and I’m new to this forum. I live in Toronto, Ontario, Canada. I have SMA Type II as does my sister. I have just turned 61, and sist is 65 now. We were originally predicted to live to 12 only, then 18, then 30 before doctors quit trying to predict our life span. We both lived in an institution for kids with physical disabilities. I was there from age 7 until I signed myself out at age 18. My sister was admitted the same year as me (1965) but she was 11, so I was institutionalized longer.

At the time I left, we were starting to see supports services in the community for people with disabilities to live independently with supports. It meant that I could live by myself but have physical assistance paid for by the government. Because of this, I was able to go to university, begin my career, and work full time until I retired at the age of 60.

I am now married 30+ years. My husband and I have 2 grown daughters and a granddaughter who will be a teenager before too long.

I volunteer with a number of organizations. Citizens with Disabilities – Ontario (CWDO) advocates and educates around making society and systems more accessible for us. PACE Independent Living provides support services to people with physical disabilities, head injuries, and disabilities like Parkinson’s to live their life in the community. I’m also active in my local church and on an advisory committee with the Council of Canadians with Disabilities (CCD) to address transportation – whether it be trains, planes, interprovincial buses or ferries. And for the first time this year, I served as a juror to select films for the ReelAbilities Film Festival in Toronto!

I consider myself a “living fossil” with regard to societal changes which have helped people with disabilities move forward. I’m looking forward to reading conversations about other people’s experiences and to chime in about mind wherever appropriate, and I hope, helpful.

[tracy-odell]

I have started watching special. Interesting series – each episode is only 15 minutes long.

Jim Parsons from the Big Bang Theory is one of the creative people behind it. The show deals with the intersection of being disabled and gay. There are some great moments. Ryan O’Connell who has CP, is the creator of the series and stars in it.

I recommend it, although it is quirky and some situations might be offensive to some viewers.