Living with disability

[Tabitha]

OK lots I could comment on.
Lately I have been writing letters to the local swimming pool so students could get a discounted "special needs swim pass". I called the pool and we talked. I suggested I put name and grade on form and that student had a disability. They agreed that was sufficient. I felt pool staff did not need diagnoses and they agreed.

Now there is a whole group of folks who believe that you should not get a discount just because you have a disability. They feel it is "ableist" to assume all folks with disabilities must be low income, and need discounts. It's an interesting thought.

 

[Pinga]

Tabitha, I have a family friend. Both my friend and her spouse worked at well paying job. They have one child. That child lives with down syndrome. Definitely a disability. Their house was paid for, they had good retirement incomes and pensions. Yes, they worried about ensuring they saved enough money for the care of their child as they got older; however, they weren't hurting in such a way that they required discounted swimming passes or others. Should their daughter get it. Probably, just like a senior likely should be offered it. Yet, they aren't by a long shot in the same situation as the person who is a single mom living with a child who needs constant care due to a form of MD.

 

[Kimmio Laughterlove]

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.

I know I am not the only one! Why do you think I am arguing so strongly! If it was only me I could understand the attitudes but it's many thousands. And part of disability rights 'activism' is anti-poverty activism. A gaurunteed annual income is a great idea. It doesn't cover some of the extra costs for assistive devices or assisted living many people with disabilities need so there should be an adjunct system to address that too - so people with disabilities really have equal opportunities to participate in all aspects of society not just sustaintenance -I agree with you.

 

[Pinga]

I guess, Tabitha, my question is... what is right, and who should get subsidies? .

We have reductions in taxes for families for children due to just being born (clawed back from parents with income over x, if I remember correctly
We have families that would get day care subsidies based on regional analysis of needs.
We have various levels of government giving subsidies, which really rely on the individual knowing how to walk and be their own advocates or having folks like you being an advocate for them.

We should have an amount of money for additional costs / staffing for families dealing with increased costs (care, equipment, housing, etch) due to the additional requirements of youth with special needs. (?? should this be clawed back if individuals have x income)
We should have a minimum income, including for assisting living , special equipment etch, seniors with low income, etch.

In all those cases, it would be interesting to see what folks thing is minimum. I bet Seeler would propose a smaller amount, just because she has shown her wisdom time & time again at living cleverly . I would likely feel it should be higher, coz I have approached problems with cash for so long). Neither is necessarily the correct amount.

As a person who used to be engaged in a conference where we tried this out, it amazed me who felt they should get qa subsidy, and those who didn't. It truly wasn't made on comparable means. In some ways, we had to be advocates to folks to tell them to ask for the subsidy who truly deserved it.

 

[Kimmio Laughterlove]

I guess, Tabitha, my question is... what is right, and who should get subsidies? .

We have reductions in taxes for families for children due to just being born (clawed back from parents with income over x, if I remember correctly
We have families that would get day care subsidies based on regional analysis of needs.
We have various levels of government giving subsidies, which really rely on the individual knowing how to walk and be their own advocates or having folks like you being an advocate for them.

We should have an amount of money for additional costs / staffing for families dealing with increased costs (care, equipment, housing, etch) due to the additional requirements of youth with special needs. (?? should this be clawed back if individuals have x income)
We should have a minimum income, including for assisting living , special equipment etch, seniors with low income, etch.

In all those cases, it would be interesting to see what folks thing is minimum. I bet Seeler would propose a smaller amount, just because she has shown her wisdom time & time again at living cleverly . I would likely feel it should be higher, coz I have approached problems with cash for so long). Neither is necessarily the correct amount.

As a person who used to be engaged in a conference where we tried this out, it amazed me who felt they should get qa subsidy, and those who didn't. It truly wasn't made on comparable means. In some ways, we had to be advocates to folks to tell them to ask for the subsidy who truly deserved it.

Adjustments based on cost of living in different regions needs to be considered. $1000 a month goes a long way in parts of the country but is barely enough for a bachelor apartment here or Toronto - and TO or cold places even more PWDs and seniors shut in due to weather. That also needs to be considered.

 

[Tabitha]

Just for clarification-the argument for no subsidies is for adults-not children. It is ableist to assume all adults with disabilities can't work or only work part time.

Some examples-Bill is totally blind. He's an English Prof at a University
DP broke his back at 17. He's a retired lawyer.
A young man with Down syndrome maintained the cadaver labs when I was an OT student.

 

[Kimmio Laughterlove]

Just for clarification-the argument for no subsidies is for adults-not children. It is ableist to assume all adults with disabilities can't work or only work part time.

Some examples-Bill is totally blind. He's an English Prof at a University
DP broke his back at 17. He's a retired lawyer.
A young man with Down syndrome maintained the cadaver labs when I was an OT student.

I don't assume they can't work or work part time. I do assume that, even so, they will be earning much less but will have to pay for more. That is, if can they can get hired with their disability and not fired because of it.

I know a lawyer who lives in a custom built house (the I know someone thing) who uses a wheelchair - has most of his life. He had wealthy parents who paid for his way through school, paid for his accommodations, etc.

I know him because a friend of mine tried to set us up years ago before I was married. She thought because we have the same disability (but I don't use a wheelchair) that we would have so much in common. We had very little in common and I found him to be a sexist jerk. Point is - his opportunities were different and made easier. Of course many people with disabilities can work.

 

[Kimmio Laughterlove]

Managing the cadaver labs? Would that be the sort of job almost noone else wants to do? I can imagine so. It needs to be done - so maybe we should expect developmentally disabled people to do it? For less pay? (sarcasm)

 

[Kimmio Laughterlove]

@Tabitha it is ableist to assume that because of a few people with disabilities who have had more advantaged opportunities, or were exceptional, the same holds true for the majority. You have it backwards.

 

[Kimmio Laughterlove]

That's like saying Obama and Oprah were hugely successful so racism doesn't exist and black people on the whole aren't disadvantaged still. Or that because there are prominent first nations people and some working in higher paid occupations, that first nations people don't still face discrimination or aren't still suffering residual effects of it.

 

[Justme]

Actually it would be like saying Oprah and Obama are black AND financially successful so they can't get a grant from the government to pay for their kids' education when other black Americans can access said grant.

The fact that Obama and Oprah are well known does show that we have made some inroads that does not negate that more work is required.

 

[Justme]

@Kimmio maybe you could write a letter to the BC ferries people and suggest that they might get involved in this program so that PWD can have a support person travel with them. That would be a concrete step to making a difference in addition to the work you are doing in increasing awareness.

http://easterseals.ca/english/disability-travel-card

 

[Jaebius]

Who comprises these disability rights groups? Are they truly representative of everyone with a disability? Are they groups of bitter - militant PWDs using their disabilities to get advantages for themselves?

 

[Justme]

@ChemGal I hate experiences like the one you describe. I try to leave and calm down (and I vent). Then I write (or if I have to call) the organization and explain what transpired and how it made me feel and ask if they could use this as an education experience. My Uncle had ALS. I read once that one of the reasons there are fewer services for people with ALS is that once a person gets the diagnosis all the energy is used toward helping him/her to live safely so there is no energy for advocacy and once the person passes the family/caregiver is so exhausted they just can't advocate and then it is psychologically distressing to advocate (or develop their own health problems). Sometimes I think this happens on other issues which is why I try to do what I can. It would be nice if someone would do it for me sometimes (like Mr. Me). I am also quick to compliment people who treat me well despite or because of my handicaps. For example, last fall I had to go for an ultrasound - I was so anxious and then I found out that it was an "internal" ultrasound and was so upset. The technician was incredible and I got through it quite easily and didn't feel horrible about myself (well, at least not a lot) - she also gave a head's up to the mamogram technician who was also amazing. I emailed the company and explained what had happened how much it helped.

 

[Seeler]

Managing the cadaver labs? Would that be the sort of job almost noone else wants to do? I can imagine so. It needs to be done - so maybe we should expect developmentally disabled people to do it? For less pay? (sarcasm)

Kimmio - there are a multitude of jobs that I can't imagine most people putting at the top of their preference list. Many of them pay well - proctologists for example, and doctors who preform autopsies - and the scientists who examine feces. And others that pay fairly decently - garbage collectors, city employees who work in sewers. And unfortunately many that do not pay well. I had a friend who, just out of high school, got a job typing up reports in the office of a psychiatric hospital after several others turned it down because they couldn't handle reading about the symptoms, imagining them and having their sleep disturbed by thinking about their work. Not a job most people would want. But she stayed for 30 years, moving up from a lowly clerk-typist to an administrative position. Lots of people do jobs that 'almost noone else wants'. Without knowing the man Pinga refered to it is impossible to know what he thinks of his job - possibly he is quite proud of his ability to do it well - and I can't see why he would be paid less than any other person who is willing and able to do the job.

 

[Kimmio Laughterlove]

I don't know how many times I have to tell people I worked in an employment program for people with disabilities. I saw, how people often get "placed". Maybe the young man liked his job. Maybe. Big maybe. Was he paid what anyone else would be or was it a special position? Were there other choices he could've made?

 

[Jaebius]

I don't know how many times I have to tell people I worked in an employment program for people with disabilities. I saw, how people often get "placed". Maybe the young man liked his job. Maybe. Big maybe. Was he paid what anyone else would be or was it a special position? Were there other choices he could've made?

So --- you worked in a special employment program - but you're opposed to people getting special employment?

 

[Kimmio Laughterlove]

No I am frustrated by how the programs cut corners. There used to be vocational rehab consultants and counsellors who were social workers - those more specialized programs ended - funding cuts/ "revamping" - and very few remain working in the new programs.There may still be a few more comprehensive ones for people with developmental disabilities specifically - called 'customized employment' programs.

 

[Lastpointe]

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.

That was sooooo unprofessional. An ultrasound tech is questioning the patient about why the test. Makes me wnt to scream.

Gee, maybe just do your f...... Job. Hey. Ever heard aboutt anything causing swollen lumps in neck other than virus.


Those sorts of things drive me crazy



Certainly an issue i can see in our large spread out country is the weird way health care is delivered. Federal government makes rules, oversees, butprovinces provide. And they do it differently, cover different things.

I ontario for heavens sake they cant even get their EHealth system up and working. Google knws everything about you but thegovernmetn cant figure outt howto have electronic records available to all in the system.

I see the frustration. And i can see the annoyance for doctors letters. Frustrating for docs as well.

 

[Lastpointe]

Managing the cadaver labs? Would that be the sort of job almost noone else wants to do? I can imagine so. It needs to be done - so maybe we should expect developmentally disabled people to do it? For less pay? (sarcasm)

No. Would be a wonderful job for anyone interested in medicine, school, research but who perhaps didnt want the rigors of med school