Living with disability

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An acquaintance of mine was badly injured in an motorcycle accident - prognosis: she wouldn't survive. She did. Prognosis: she wouldn't come out of the coma. After a couple of weeks she did. Prognosis: she would never walk. She did with two canes. But she has plateaued. She has limited mobility, limited use of her arms as well, pressure sores, pain (except on one leg that has no feeling but breaks out in horrible ulcers). After several years of legal struggles she received what looked like a great settlement. We all cheered for her. She was able to afford a full time assistant so that she could live independent of her parents (she was in her 40s). She and her attendant were able to take a holiday to Disneyland. And that's about it. Her big settlement is just enough to cover her living expenses - the holiday was a one time thing. She will watch her pennies for the rest of her life.
Without that settlement, I don't know how she and her father (I bowl with him) would manage.
 
The discount they would give me if I qualified is about $8 each way. Would add up to about $50 a year for them. The other $8 I could spend in the cafeteria so they wouldn't really lose anyway.
 
I find those little things frustrating Kimmio. Small changes that aren't at all difficult to implement, yet aren't done. Having lids in both places wouldn't be a big deal. There's usually enough space already, so it's not like a business needs to plan to have a bigger counter area or something like that.
 
Re asking for discounts. Don't assume that the person behind the ticket counter can guess your age, (or I imagine your disability).

One time I was in Halifax with my daughter and granddaughter (probably around 12). We walked up to the ticket counter and asked for tickets for the ferry to cross the harbour. $xxx. 'What?' 'Three tickets for $xxx each.' I looked up to the sign posting rates. 'But I'm a senior.' 'Oh, sorry - then your ticket is $yyy.' 'And she is a child', I pointed to my granddaughter who is admittedly mature for her age. 'Sorry, sorry, sorry. I didn't notice. I just thought you were three girls out for the afternoon.' We all, including the ticket person, had a good laugh.
 
ChemGal said:
It is complicated. With that settlement, how much of that is going to one aspect of care, and would that discount mean they aren't scrapping to get another aspect of care, or something to improve their quality of life?
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What about those who are simply trying to pay their rent and maybe get to go on a little ferry ride - maybe they need to - and still all their care needs are not fully met but they cope? And that's how they have always lived and lack opportunity. I see your point but I don't think you see the relative disadvantage vs priveledge. You realize how many live the scenario I just outlined? Most. So in your scenario above I would say no discount. It is not fair.

Sorry...a millionaire being entitled to the same discounts a poor person - just not fair. Systemic inequality..
 
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Kimmio said:
What about those who are simply trying to pay their rent and maybe get to go on a little ferry ride - maybe they need to - and still all their care needs are not fully met but they cope? And that's how they have always lived and lack opportunity. I see your point but I don't think you see the relative disadvantage vs priveledge. You realize how many live the scenario I just outlined? Most. So in your scenario above I would say no discount. It is not fair.

Sorry...a millionaire being entitled to the same discounts a poor person - just not fair. Systemic inequality..
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I don't think you were understanding what I was saying completely.

Someone's in a car accident, they get enough money to cover physiotherapy, but nothing more. They have pain.

Someone else also has chronic pain, physiotherapy won't help.

The two people make the same amount and have similar assets. The government subsidizes a pain medication that both of these people take. Should the person who had physio not get the subsidy because they had money for physio?
 
Kimmio said:
Sorry...a millionaire being entitled to the same discounts a poor person - just not fair. Systemic inequality..
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Right - not fair. How then does the system determine who should receive the discount? Currently, by means test. But you don't want that either. So what's the solution?
 
Carolla said:
Right - not fair. How then does the system determine who should receive the discount? Currently, by means test. But you don't want that either. So what's the solution?
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I don't know - should multibilliodallar companies be requesting private info requests and functional assessments and/ or doctor visits? All that cost far more for the government than the 50 bucks a year it would save me.
 
So it comes down to systemic discrimination built into the system. Financial assistance of all types for people with disabilities cost the government less than the perks that wealthy people get but due to lack of opportunity and further discrimination many are stuck in poverty and just supposed to accept their lot in life or get jobs beneath their hopes and abilities. It's ghettoization. There are a few people overcome it - or it's up and down like me - but not the majority - and people say "but what about Rick Hansen or that MP - they did it" without realizing how much easier said than done it is. My family could help but wants me to find my own way. I'm too old for their help in their opinion -I never had any trust fund or anything - so people I don't think realize how undignifying it can be to live life at the bottom of people's perceptions and attitudes, and be poor.
 
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Kimmio said:
FYI I wrote them a letter several years ago asking them to keep lids beside the coffee and pop machines that are in the cafeteria line instead of up by the cashier. They have people carry open and hot drinks while the boat is swaying. I had to make a big production and hold up the line asking for help to get to the til with my drink when I realized there were no lids at the machines.

I got a BC Ferries post card with "Thank you for your feedback" but nothing else and nothing changed. I think it is organized differently on the newer boats.

I wrote a similar letter to Starbucks but nothing changed. Because they keep the lids across the room from the til where the cream and sugar is. But at least they offer to help. Would rather do it myself - carry with a lid on - than hold up the line up while they carry it for me though. I try to remember to get a lid before I order.
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It's good to hear that things are now organized differently on the newer boats ... perhaps you were listened to after all. That's the thing of it ... change often happens so very slowly we can barely perceive it. But a change has occured - so well done Kimmio.
 
Kimmio, believe it or not you are not the only poor person on WonderCafe. Being poor stinks. Everybody should have the right to enough income to meet necessities including ferry transportation. That's why I think that we need a guaranteed annual income that enables us to live with dignity.
 
A few people have made note of doctor's notes. It drives me "crazy" that I have to get a doctor's note each year for my allied health services in order to have it covered by my insurance (a private company). Physio, psychologist visits, massage, orthodics - maybe people who don't need massages would get them but physio and orthodics - are there people who really do this for "fun"? At this point in my life I am financially secure. But getting to the doctor's appointment to get these notes is a huge problem given my disabilities. I do it because it does benefit me financially but what a waste for the health care system (and my family doctor who I love often has waits of weeks to get in even if you are unwell - how many people are there to get these notes?!?). I also have to prove every year that I am disabled but they have backed off on needing a complicated form filled out by the doctor but I have to consent that they can contact him whenever they want - if I want the service I have to give up my privacy.

I had to laugh - my 90 year old Aunt who uses a walker - has a handicap parking permit. I was able to change her address over the phone by telling them I had POA and knowing her information but I can't drop off the renewal in person unless she fills out a form authorizing me to drop it off. Uhhhh - what? The agent suggested my Aunt should just come and wait to drop it off - it's Ottawa in January - not super friendly for a walker and the office is small and crowded.

Test results also bug me - I worry. A lot. So they send me for a test and tell me that I will hear from them if something is wrong. Well, it happened this summer that they didn't get my test results and then tried to slough me off. I went to my family doc and he got the results (after a lot of red tape because even though OHIP paid for my tests my family doctor could not request a test that another doctor ordered on me, his patient) and my muscle was torn. I'm pretty sure that I wouldn't have been written-off if my mental health had not come up (the doctor said some bizarre things like do you really need all these drugs? I think they may be causing your problems you may want to consider lifestyle choices....). But on regular test results I worry that there is something wrong and the test result is lost or something. My doc's office policy is not to even say if they have received the results - I don't even want to know what they are - just we have received them and the doctor saw them - I can draw the inference. Instead I have to make an appointment, battle anxiety to get there and anxiety while I wait in his packed waitingroom (worrying about what illness I am catching).

One of our local hospitals is doing a pilot project where someone with lived mental illness experience is going to work as a peer support in the ER for when people come in with psychological pain.

I hate how everything is based on statistics. Our LHIN is cutting funding to DBT programs because they can't prove people get better (should we microchip people?) - it was so helpful to me that it makes me so upset to hear this. I spoke to CMHA board of directors to advocate for sustained funding. The program at the hospital that had a year-long waiting list has been cut. The 8 week half-day outpatient program's funding is also cut - I learned a lot in it but there is no follow-up and it is so hard to overcome obstacles on one's own.

My church is very interested in eliminating barriers. In two weeks our service is dedicated to mental illness (we did one two years ago too) with a lunch and learn afterwards. And they do volunteer at a low-income property for people with disabilities. We also make efforts to welcome people with disabilities (as well as LGBTQA).

I would also like to see more effort put toward helping people have "lives worth living". It's great that we can keep people living but how do we help them build a good life. In Ottawa we have a group called Citizens Advocacy (I think) they match PWD up with typical ppl and they go on outings or share common interests (running is an often requested activity that they need help with) but very few people volunteer - I think part of it is a marketing problem and part of it is ignorance - people are worried they would get in over their head. Or I would love someone to go to the gym with who would be gentle. I have tried to hire a personal trainer to work with me here at our gym in our building but it didn't work out - he did not get me. I met a personal trainer at the Y that I really liked and she said she would train me privately but has not returned my calls which sucks. A friend does get me out to spin class most weeks but it is no longer working out for my schedule.

Similarly, I would love for there to be a way to access services that are important to health but aren't necessarily health services like dieticians. I can pay and because of that I am shut out of healthy eating courses for people with mental illness - a weird reverse discrimination. Similarly I am a client of CMHA but technically I should not be because my housing is not in jeopardy (but they look the other way for the time being) - but I don't take funds from them - they offer honourariums for some work and I refuse. And I try to contribute financially to events, etc so that the organization isn't shouldering the burden.

Someone I would love to figure out a way to tell people to breathe before they judge. Because I have tics does not mean I am stupid. Because I am not living below the poverty line or am married does not mean I am not depressed. Because I can do some things does not mean I'm not "really" anxious and am really just lazy. The Tourette's society has a bit of an ad campaign that says "The only cure for Tourette's? Awareness" (or something similar). Ask me questions about the illness - I actually have no problem with that (but I see Kimmio does so there is no one size fits all - I'd rather be asked questions than for their to be assumptions) but I hate nosey questions - if you don't work, aren;t you bored? what do you do with yourself? why don't you have kids? have you tried X? My friend gave up gluten and is no longer depressed....My family is pretty bad about some of this - if my Mom calls on a bad day she will almost always tell me that if I just (went and did laundry) I would feel so much better or that I Just need to kick myself in the butt - this actually may be true but a little empathy goes a long way. (Brene Brown who is an amazing speaker says that empathy is shame's biggest enemy and she is so right).

On the flip side - I hate people who enable themselves through their disability - there is a guy in one of my groups who says "I'm kookooo for cocoa puffs" and then acts strangely because he can (not because he has issues). Or asks for a discount when they don't need one (It happens at movies all the time apparently).
 
Thanks for the long post, Justme,

I can't imagine having anxiety and delaying with test results now that you mention it. I remember being anxious about something that I really should not have been anxious about. It was at a time in my life when fear and anxiety were high and I just needed to be tested. My doctor understand and did the test and provided the result. That was a one-off, but, I have a teenie-tiny sense of how much pain that could generate.

I have heard the doctor's forms mentioned a few times by coworkers as well.
The repeated tests and doctor's papers also apply when requesting certain positions. For example, my son has to pay to be evaluated (physical), and to write an exam for many of the times he applies for jobs. These an add up.
I share that, as there are many cases where we do repeats because there aren't central repositories.

In the case of age, it is relatively simple to have a form such as one's driver's license which is a government document which states your age. Age is just a simple number.

For individuals who are disabled, there are various levels and types of disabled. I can imagine a system that tracked a classification method; however, the complexity of security would be high.

I sense from previous forms that I have had filled in, there are a fairly general series of health questions asked of the doctor. It may be a short-form and a long-form, where long-form is used for folks with disability classification, and short-form for general "yes, you have all your vaccines, etch).
That form would be issued once by a doctor, held by the patient, and be acceptable to any firm or agency looking for a form.

A second step would be a form that says " as of YY/MM/DD, my medical condition has not improved since YY/MM/DD." It would be issued annually by a doctor (or Nurse practicioner). By having same document, if you had previously filed a form with x agencies, you would not have to have a doctor reprovide the main form, just give them the proof of "no change" or "no improvement"

In addition, I could see this being nationally managed through some form of card. I'm not sure you would want it attached to your health card, but, maybe a secondary card..(thinking of security here)
 
I was just thinking (if you heard a loud noise that was it :) When I started to volunteer at 10,000 Villages I had to take an accessibility training session and write a test. I was really surprised by some of the stuff. Some of it was obvious to me - speak to the person not the companion, make eye contact, etc but things like if someone in a wheelchair comes into the store don't offer to get something for them - greet them like you would any other customer but wait for them to ask. I find this odd. The people in my life with mobility issues almost expect for someone to offer or are offended if help is not offered (couldn't they see that...). There are a few staff where my Uncle is who ask me what he wants for lunch - there is little wrong with his mind so why not ask him? Or at least ask and I can "translate" if there is a communication barrier. There was another example of helping someone who was visually impaired don't ask them if they want something described wait for them to ask. It just seems odd to me. I guess it's a fine line between pity and helping.
 
Pinga said:
Thanks for the long post, Justme,

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I really hope that's not code for "OMG Justme you talk too much" or if it is please let me know and I'll try to be more succint :)

Thanks for the empathy about the anxiety around test results - my family has a bad family history especially for diabetes and heart so I hold my breath until my diabetes and cholesterol tests come back.
 
Lots of posts on this thread, many of them making valid points. I have often wondered about the difficulties some people have when they need extra assistance (transport, carrying things etc). At least some of these people would qualify for a disability sticker for the car. Could these be expanded to cover assistance with ferry rides, discounts and so on? Possibly they could be expanded a bit to include a photo so they don'[t get shared with friends!
 
Justme, I could use your post for a jumping board to go into so many different rants. I'll restrain myself though, as I've shared many of them already :)
I get annoyed by those in health care though. When I had an ultrasound on my neck due to the sore throats and swollen lymph nodes she pretty much rolled her eyes and said people's lymph nodes swell when they get a virus. *sigh* It wasn't my decision to get it done, I didn't push for that test from my doctor, my doctor wanted it. While that may be typical symptoms it isn't normal for it to last I think I was around 8 months at that point.

I wish there was some sort of follow up with the worker once a serious issue is determined.
 
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