[tracy-odell]

I don’t think it’s fair to say someone is thinking like a “victim” because they notice something is inaccessible or that accessibility has been taken away. It’s true to say that we all are going backwards when it comes to accessibility!

I’m 66 years old now, with SMA type II, and I can remember how hard the community fought in the 1970s-1990s for accessible services, buildings, direct funding for attendant services and more. In Ontario, we even had a dozen or so accessible apartments buildings with 12 to 16 units reserved for people with physical disabilities who also needed attendant services. 🙀The attendant services were shared with all of us who lived in our own, individual, accessible apartment. These became known as “Supportive Housing Units” and now Supportive Housing has nothing to do with accessibility. It has to do with housing people who are able-bodied but need support for addiction and mental illness (which are also included as disabilities).

People with disabilities remain on the margins of a larger, designated group of marginalized people. I live in Ontario, Canada, where we have accessibility legislation, but our accessibility laws pale in comparison to the ADA. Because our legislation does not require anybody to respond to complaints, let alone actively confirm compliance, many violations go under the radar and are not addressed. In fact, it is the American legislation that has the biggest positive impact on accessibility in many ways. If I travel to the states, for instance, I don’t have to worry about hotel rooms being accessible or having accessible transportation. I hope, hope, HOPE for American law to require accessible air travel, so I can have a way to travel in an airplane without getting physically harmed with all the transferring we are forced to do now or having my wheelchair damaged or even lost in transit. I advocated for this in 1980, and the government representatives chided me for being unrealistic, is that it couldn’t happen “overnight”. If they had committed to accessible air travel back then, what would it look like today, 40 years later?

Younger generations won’t have experienced a time when there were no curb cuts at all, and we dashed from driveway to driveway just to cross the street. Sometimes this resulted in taking a series of long detours, draining our wheelchair batteries and adding to our travel time. It also put us at risk of being hit by a car, since the public would not expect us to be riding on the road.

If anyone with a disability notices deficiencies in accessibility, I don’t believe it is fair to judge them as “negative.” They are being observant, and critical. Some people with disabilities may get uncomfortable if we get vocal. I used to be one of them. I just wanted to blend in, and so if someone made a fuss, I felt centred out. But even if some people might cringe, it is important in a democracy to speak out and remind people that everybody deserves to be included – in large things and small.

Today, seniors are our biggest allies in advocating for 100% of how things to be accessible, for community options to living in nursing homes, and for accessible shops and restaurants. Yet ironically, back in the day, seniors would not join our advocacy efforts because it made them uncomfortable. They felt it was up to us to modify the environment, and that people should not be required to pay modifications for the minority of people who might need them. Oh, and they don’t consider themselves to have a disability, just “a bit of trouble” getting around or understanding others who are mumbling. People with disabilities, in fact, have done a huge service for baby boomers with our advocacy. Now seniors are supporting accessibility causes in swelling numbers.

That’s my Canadian 2 cents’ worth, which is probably only 1.4 cents American🙂. The bottom line, for me, is to speak up so we do not lose any of the hard-won rights we fought for, and to support people with disabilities who insist on accessibility, revealing every crack, gap and chasm that remains.

[tracy-odell]

I’m also interested in the book club. As it happens, I bought Judy Huemann’s autobiography and am part-way through it.

Is there a date set to discuss? Should we meet on Zoom? I could set up a room if people could indicate their time zone and preferred time to discuss the book – during the day, evening, morning etc.

[tracy-odell]

Until I was about 21, my numerous New Year’s Resolutions focused on improving my diet and study habits ultimately to find a good job. My resolutions after that focused on advocacy – such as changing the rules that governed my attendant services and para-transportation; and about improving my relationships, with my husband, my children, my boss and the people who reported to me. Now that I’m retired, my resolutions centre on strengthening connections with my hubby, friends and family. But I find I am making more deliberate decisions to spend more time “helping” rather than “volunteering“. I will be turning 66 this year and I have SMA 2 (I never walked). My neurologist feels I should expect to have many more birthdays, as long as nothing big (like pneumonia) goes wrong. That good news makes me even more mindful about how to use my remaining time well.

[tracy-odell]

Hi again,

An in-dwelling catheter is a 15″ – 20″ silicon catheter that is placed into the urethra (the pee hole). It stays there all the time and your pee gradually runs into a urine collection bag. There are small bags for use in the daytime that fits under slacks/pants (typically called leg bags in our neck of the woods.) There are larger bags for use at night, which are place on a hanger between the mattresses on my bed. The bags are changed and attached to the catheter that is in place. The catheter is changed once a month. Bladder infections will occur. I’ve had about 3 infections in the past 2 1/2 years. Sometimes there are problems if the catheter gets disconnected from the external tubing. These accidents require changing of my clothes. and happens once with each new attendant. The resulting work it creates to get me back into bed and get me changed is powerful incentive for them to make sure they do the connection right the next time 🙂 A nurse comes and changes the catheter for me once every 4 weeks. An attendant can be trained to do this. I would say if they could do a tampon they could learn to do this. But because I can get the nurse to come, and it is covered under OHIP, I’m not planning to train my attendant. Besides, when the community nurse comes, they pay for my urinary supplies, so I don’t have to buy the bags, catheters, sterile water etc. needed. The nurse is at my home for only 15 to 20 minutes, and she calls ahead to confirm the time.

After a year of in-home service, I was asked if I could go to a clinic to get it changed. I explained that it would be impossible since they didn’t have a ceiling left, someone qualified to use it, and an attendant to help me get addressed and dressed again. They agreed. So I continue to have the changing catheter service at home. If I had a significant problem with the catheter being blocked, I can call the nurse on the cell phone and make arrangements for her to come the same day to change it. Fortunately, I have very flexible nurse assigned. On the 2 occasions they sent someone else, things did not go quite so smoothly. Overall, I’m glad that I did it.

The Super Pubic Catheter (SPC) is minor day-surgery which can be done while awake. It requires the insertion of a short catheter directly into the bladder through the abdomen, below the belly button. I think a short catheter is inserted each time a person needs to go pee, but not sure. I decided against this option because I thought I would have trouble with it. My back is quite arched so my belly would probably be a problem. There is info on the Internet.

Then, there’s the “Mitrofanoff Procedure” which is major surgery to create a stoma (a raised cherry size bump) that is visible outside the abdomen. It provides a direct connection from the bladder. I think the bag is directly attached around the stoma by being glued on. I’m not sure how often it has to be changed, but probably when the glue starts to loosen up and leaks start to happen. I don’t know much about this because I dismissed it as an option due to the time the surgery would require.

[tracy-odell]

I gradually lost control of my bowels and then my bladder. I figure it is because my back is curving above and below the Harrington Rod used 50 years ago to fuse my back. I chose to have an indwelling catheter, so it only needs to be changed once a month. It has been so liberating to be able to “pee like a man!” Throughout my teen and adult years, I drank very little water because getting help to go to the bathroom was labour-intensive for both me and my attendant. I can now drink as much as I like.

Managing the bowel issue has been more difficult. But since these difficulties were connected with my spine collapsing, I asked to be referred to someone at our local rehab facility for people with spinal cord injuries. After all, I know many people who are quad- or paraplegic, and they seem to develop a very reliable routine.

Here’s a summary of the advice I received from the nurse. I have made modifications as necessary. For instance, I used to “go” every other day, but now I tend to go every day. I follow my body’s language in this regard, and 95% of the time things work out as planned.

Experimentation is needed to figure out what will work best for you. I found that it was necessary to try something for at least a week or 10 days to establish whether that variable/combination would work, so I was neither be constipated no have diarrhea.

Basically, decide on your preferred routine – early in the day, bedtime or some other time. The night before I plan to “go”, I take two Dulcolax pills. One pill is enough for most people, but I need two for it to work. Then, in the morning, I will need to “go” shortly after getting my wheelchair, but I will need a suppository to get things started. It took a few months, but I can reliably count on being able to go to the bathroom every morning after I get up. I can make sure my appointments are scheduled no earlier than I can manage to complete my “go” routine.

I wear a thin+absorbent pad in the case of accidents. This handles almost anything that starts to happen before or as I am getting on the bedpan. It is also protection if anything happens on the way into bed. Most times, all is well, but if not I am “covered.”

The nurse gave me all kinds of graphic information about how to insert a suppository, and what you should strive for the poo to look like. Just email me if you want them, and I will send them to you. I’m at [email protected].

[tracy-odell]

Same here…{sigh}

[tracy-odell]

I will get boosters whenever recommended. I am due for my 2nd booster in June.

[tracy-odell]

Creative writing – myself

ADL – help welcome

[tracy-odell]

Toronto, Ontario Canada!

[tracy-odell]

Re Blake’s post – I have the same difficulty clicking a mouse. It has been getting harder to do, especially if I’m on the computer for several hours at a time. I also learned about Sugru through your site that is available in Canada. I’m hoping it will help me with my mouse and my iPhone button (yes, I still have an old iPhone.) I don’t use a Mac, so I need to figure out how to operate my space heater by voice. I have no idea how I could use my computer laying down, so I want to learn more about your set-up.

I would love a group Zoom chat to compare notes about our life-hacks with computers, ADL, transfers, etc!

[tracy-odell]

Every morning I take creatine, vitamin A, vitamin B, vitamin C, vitamin E, coenzyme Q 10 which was recommended to me at least 20 years ago by a doctor specializing in SMA and similar muscular conditions.

I am about to turn 64, I’m retired after 30+ years of working full-time, a wife, mother of two adult children and have two grandchildren. Perhaps this medical cocktail  helped me to slow down the progressive effects of SMA 2. Perhaps it made no difference. My sister, who also has SMA 2, did not do this supplemental regime, and she lived to be 65.

[tracy-odell]

Ontario produces a good emergency preparedness handbook for people with disabilities. The checklists may be helpful.

Canada also has a good emergency  emergency preparedness handbook 

[tracy-odell]

I use Siri on my iPhone and recently found I can say “read me my text messages” and it will read them. It includes saying the name of emojis, but does not give a visual description for images – it just says they sent an image or video.

I can also ask Siri to call people by name or to call numbers by stating the phone number.

Similarly, it will read me my emails.

Siri will ask me if I wish to reply and if I do, I can voice my reply. Have to have a high tolerance for it misunderstanding some words, but is good for short replies, especially in a text.

[tracy-odell]

My supplier is very good (Toronto, Ontario). The nurse who comes always keeps some supplies in her car, “just in case”. She has used some of her supplies twice for me when I did not have something, and once  borrowed my supplies for another client.

I don’t pay for the supplies myself, so I am quite happy to help out by sharing to make sure the next person has what they need, too.

It’s that kind of flexibility which makes it work.

[tracy-odell]

Have your essentials brought to you by a friend or family member, so they can move them from room to room as you are relocated from one area to another. Bring the bare minimum and stuff that’s easily replaced if lost or stolen.

I brought my electric toothbrush, comb, a printed list of phone numbers in case my cell phone wasn’t handy – just a few family members and attendants. If you can physically manage a novel, it’s nice to have a good book. I also have my Rx meds with dosages etc, a list of contact info for my various doctors and a list of anything I’ve been diagnosed with and when.

[tracy-odell]

Thanks for this! Well done and what a great message, eh?

[tracy-odell]

Receptionist after school and weekends in the hospital where I lived. I also typed essays and meeting minutes on a per/page basis.

[tracy-odell]

I long for the day when I can stay in my electric wheelchair in the aircraft cabin. I have not attempted to fly for many years because of all the reasons cited in DeAnn’s post. None of the accessibility initiatives undertaken in Canada have addressed this. Only in the US is a committee even taking a look at this possibility with airlines lobbying hard to delay implementation for as long as possible.

[tracy-odell]

I am being just as careful; no change. I could carry the virus as easily as could get it and I was vaccinated with Phizer both times.

[tracy-odell]

I think we can move to “pride” now.

[tracy-odell]

What voice commands? I just know about assistive touch.

 

[tracy-odell]

I have an irrational fear of spiders, so bee, definitely. At least I can blow on it to make it go away. (I guess my breath doesn’t smell like honey.)

 

[tracy-odell]

Every inch can make a difference in being able to reach your stuff and have the leverage to drive your wheelchair.

If it’s a small difference, you could try letting a bit of air out of your tires to see if you can sit lower without compromising the wheels or the smoothness of your ride.

or…

Raise your desk and tables with blocks of wood. Carry some blocks with you when you go out, e.g., to  a restaurant.

or…

You might be able to create a “drop seat” in your wheelchair. I had one once. They made a flat wooden board the same dimensions as the seat of my chair and four hangers were placed on it – two on each side – so that the board could hang down an inch or so lowered to the floor. It hung down from the side rails of the wheelchair. That way, you can still benefit from the thickness of the cushion. It might be very important to keep the padding so that you don’t have pressure points.

or…

I recently got a height-adjustable desk (sit-stand desk) which is great because sometimes I’m in a position where I need my desk higher or lower, so this is helpful.

or…eeek!

My first van was not adapted for a passenger in a wheelchair, but I was short enough so that I could pass through the doorway using portable ramps on the vehicle. There was still enough headroom inside, so I did not bang my head every time we hit a bump. When I changed wheelchairs, though, suddenly I was too tall to get through the door, and I could not sit up straight once I was inside. It was too big of a difference to drop the seat, so my next van had to be a converted one – at basically double the price!

I hope your seating problem will be easily solved. It can get very expensive adjusting everything else in your house to match your wheelchair height!

[tracy-odell]

I used Depo-Provera from age 12-21, every 6 months to avoid “breakthroughs.” Check to make sure it won’t halt development of her breasts. I started gaining weight at the same time. Every high weight I attained became my body’s new “setpoint.” I’ve learned it’s best to keep weight to a healthy low. Depo is not good for birth control, since you’re fertile as it begins to wear off. And you won’t know when it’s wearing off until it does.