Girl With The Cane - Latest Comments

Re: Families Hiring Disabled Tour Guides to Bypass Lines at Disney World

GirlWithTheCane — Fri, 17 May 2013 17:43:42 -0000

I don't blame the disabled people for taking the jobs either, which is why I'd argue that they not be included in whatever penalty (if any) Dream Tours incurs from running this scam on Disney...because, even if the guides pocket the full amount that the tourists pay per hour (which seems unlikely to me), it seems to me like Dream Tours has exploited the guides in that it's taken a group that traditionally finds it difficult to find employment and often lives in poverty and put them in the position of having to say, "Yeah, this is a little sketchy, but can I really turn down a job right now?"

And as for the families taking advantage of this "opportunity"...I think that you've said it all.

Re: Families Hiring Disabled Tour Guides to Bypass Lines at Disney World

Phil Dzialo — Fri, 17 May 2013 11:15:56 -0000

I could never blame a disabled person for doing what they need to do to survive in a rather uncaring world. Yet, for families who are abled themselves and perpetuate this scam and fraud, I have nothing but loathing and condemnation. Not much different from an able teen using dead grandma's Handicap placard to grab a reserved space for the disabled.

Re: US Federal Agencies Seek Public Input on Transition Issues for Youth

GirlWithTheCane — Tue, 14 May 2013 19:42:23 -0000

That's pretty much the same way it's gone in Ontario as well. In the developmental services sector, the funding that allows families to hire support workers, respite services, and purchase hours per week from day support programs has been frozen for years - they're not giving any out to new applicants. Government-run group homes and residential placements are very difficult to get into, so much so that young people in crisis sometimes end up in long-term care homes for seniors (run by a different ministry) - there's just no longer any capacity to even handle youth in crisis. And with healthcare services in general being cut to the done, anyone with profound needs in the province has trouble getting the care that they need unless they can pay for it out of pocket. Transition planning was often more about figuring out how to cut through red tape than anything else...and with the myriad of forms and coordination and advocacy that came along with it, families really needed the help.

Re: US Federal Agencies Seek Public Input on Transition Issues for Youth

Phil Dzialo — Tue, 14 May 2013 09:24:40 -0000

Good news and bad news. All entitlements (like special education services end at either 22 or upon receipt if a diploma) in the US. Each state interprets "Turning 22" in a different manner. Massachusetts has a great protocol and process for the severely disabled and a rather crappy process for mild-moderate disabled. The Problem? At least in Masssachusetts, the "Turning 22" funds have not increased in years; so if your getting assistance it continues. The wait list for funding is years long...we are too concerned here with building prisons and placing police in every school. The most progressive state in the US does not take care of those with profound needs.

Re: Good-bye, Elizabeth McClung

Phil Dzialo — Sat, 04 May 2013 06:10:24 -0000

I too followed Elizabeth and her passing is a true and monumental loss to both the blogging and the disability communities....She spoke the Truth, no matter how pointedly, no matter how harshl...she spoke and lived the LIFE! A great loss...

Re: Good-bye, Elizabeth McClung

Dennis Harless — Fri, 03 May 2013 02:11:25 -0000

Sorry for your loss, I just read a few of her blog entries, She spoke for those of us who couldn't find the strength or the words for ourselves.

Re: Thoughts on the Boston Marathon Bombings and Disaster Planning for Disabled People

wjpeace — Thu, 02 May 2013 09:34:34 -0000

I have read many of the disaster management plans produced by the Federal Government and in particular New York City. This is deeply disturbing reading. The botton line is in the event of a natural disaster all people with a disability are screwed and on their own. Sandy proved this.

Re: Disability Discrimination by Airlines – Enough is Enough

Dennis Harless — Mon, 29 Apr 2013 00:46:07 -0000

http://www.washingtonpost.com/...

Re: Musings About “Inspiration Porn”…

Dennis Harless — Mon, 29 Apr 2013 00:39:39 -0000

Sorry for jumping in on this so late, There is a place for inspiration, but along with that there is a need for people to be able to accept that they have permanent limitations they are going to have no matter how much effort they put in. Encouraging a person to rehabilitate as much as they can is a positive. Consistently putting up examples of people who are extreme cases of recovery is setting an unrealistic goal and setting them up for failure if they don't accomplish some sort of amazing recovery. I have my own blog and made an entry about what I call "Competetive recovery". http://www.shottothedome.dinst...

Re: Thoughts on the Boston Marathon Bombings and Disaster Planning for Disabled People

Camilla Medders — Mon, 22 Apr 2013 10:18:00 -0000

Great post! As the mother of a disabled child, I worry sometimes about the special challenges of dealing with a disability during a disaster. For example, I make all my daughter's food in a blender, and when an ice storm knocked out power in our town for a week, I couldn't do that. Luckily, I have a back-up recipe that doesn't require a blender, and the grocery stores were open.

As for agencies that provide care, I think that in a disaster, our agency would do whatever it took to make sure all their consumers were okay. I know this because I know that it is staffed by caring and dedicated people who are personally connected and devoted to the people they care for. Unfortunately, they are also overworked, underpaid and constantly frustrated by red tape. And trying to be caring and devoted under these circumstances is exhausting, which leads to high turnover, which means these agencies are constantly understaffed and struggling to keep new people adequately trained.

I also think the answer is more than just funding for these agencies--it's connecting the caring people in our community with the citizens who need extra care. And this means finding ways for people with disabilities to be more visible in their neighborhoods and communities, not stuck inside watching TV with a caregiver. My daughter and I have lots of people in our lives we could turn to for help in a disaster, and I wish that were the case for everyone, disabled or not.

Re: My AVM Story – Role Reversal Makes Me The Caregiver for a While

GirlWithTheCane — Thu, 11 Apr 2013 23:16:45 -0000

Me too!

Re: My AVM Story – Role Reversal Makes Me The Caregiver for a While

GirlWithTheCane — Thu, 11 Apr 2013 23:16:36 -0000

They were edible, which is all that I was hoping for, lol...and now I know that I can make them if I ever want them. :) Thanks, Phil...

Re: My AVM Story – Role Reversal Makes Me The Caregiver for a While

Amy — Thu, 11 Apr 2013 01:03:08 -0000

I love brinner (breakfast for dinner)

Re: My AVM Story – Role Reversal Makes Me The Caregiver for a While

Phil Dzialo — Wed, 10 Apr 2013 14:18:08 -0000

The opportunity to care for another is a gift from the universe which allows us to become better people. There are, unfortunately, too many people who would choose to run and disappear...it's an illness in our modern society which devalues all. I bet that you make hell of a good batch of pancakes....

Re: New Abortion Law in North Dakota re: Disabilities Not About Disabilities At All

Nisha Varghese — Sun, 07 Apr 2013 14:45:34 -0000

I don't believe in abortion but i do find it ridiculous that lawmakers would prohibit abortion based on the fact that a fetus has a genetic "abnormality".

Re: Why Do Mike Rice and his Basketball Team Matter More than Disabled People?

Nisha Varghese — Sun, 07 Apr 2013 13:43:46 -0000

That's my question to: How come stories like this get so much outrage when the stories of disabled people who are suffering gets pushed into the background.

Re: Why Do Mike Rice and his Basketball Team Matter More than Disabled People?

Phil Dzialo — Sat, 06 Apr 2013 11:05:18 -0000

Unfortunately its all about readership numbers and tv ratings...disability does not sell papers or get people to watch tv...it's a sad indictment of culture and I am pessimistic about a change.

Re: Why Do Mike Rice and his Basketball Team Matter More than Disabled People?

Brenda @ MamaBeGood — Wed, 03 Apr 2013 08:17:46 -0000

Particularly abuse of African-American disabled children and adults - often get ignored in favor of more "normal" people who are abused. Thank you for this, Sarah.

Re: New Abortion Law in North Dakota re: Disabilities Not About Disabilities At All

GirlWithTheCane — Sat, 30 Mar 2013 14:59:10 -0000

Yes, that's a tough one for me, too. Like selective abortion, I get why people choose to do it (given the society that we live in) But part of what makes me sad about it (and also about selective abortion), as I've written about in this blog before, is that there's no way to know whether even a "normal" fetus is going to end up with a disability that drastically alters the course of their life and of those around them...parents may breathe a sigh of relief that a fetus is free of "genetic abnormalities" only to have the child develop a significant disability as early as during delivery because of complications during labour. There are no guarantees (as you know). But society tells us that we should try to prevent disability even at the cost of the infant's life...the other part of it, and the stories of families who cherish their disabled children (no matter what the cause of the disability) get overlooked.

This story leaves me conflicted as well, because there's a part of me that's glad that selective abortion won't be happening in at least one state. If I could believe that this was actually about disabilities and not another assault on right to choose in a society that's just going to forget that these children exist once they're born...I could get behind this. But the state will make women have these vulnerable babies, and then abandon them all. And for women who are already vulnerable, or part of vulnerable families...it's unacceptable. I just keep coming back to that, and I can't get past it.

Thank you for your input, Phil. I always like hearing your point of view.

Re: New Abortion Law in North Dakota re: Disabilities Not About Disabilities At All

Phil Dzialo — Sat, 30 Mar 2013 09:02:32 -0000

I am very conflicted about abortion in general. First, I.'m a man commenting about a woman's right to bodily decision-making and second, well...I'm just conflicted.

I am not conflicted about selective abortion: Eric Parens and Adrienne Asch (Prenatal Testing and Disability Rights) make this distinction that I believe is quite clear: " ...most abortions reflect a decision not to bring any fetus to term at this time; selective abortions involve a decision not to bring this particular fetus to term because of its traits." Rejection of life because of a potential disability or simply, in other cases. because of gender is too akin to T-4. I guess I also have a hard time with Pre-Implantation Genetic Screening.

Re: Arianna Hill and her “Broken” Cheeseburger – Good for Chili’s!

Amy — Fri, 29 Mar 2013 09:18:06 -0000

Yes, good for Chili's. I'll have to go have dinner there.

Re: The Downside of Assumptions

GirlWithTheCane — Wed, 20 Mar 2013 07:32:13 -0000

It can be demoralizing. But insist on your right to be treated like an adult. There's no reason why you should expect anything less, and you treat people how to teach you. (I know that's not as easy as it sounds...I needed a therapist's help to get through a lot of this stuff!)

Re: The Downside of Assumptions

Amy — Wed, 20 Mar 2013 07:16:17 -0000

That happens to me all the time.

Re: The Downside of Assumptions

GirlWithTheCane — Tue, 19 Mar 2013 18:41:21 -0000

Hi Kels

In my work with intellectually disabled people, I sometimes saw what you've observed with your husband - people would automatically look to me to be the communicator and not even assume that the other person was capable of expressing their wishes. However, in my situation, the people that I've been with have usually been happy to have the opportunity to try to communicate passed back to them - if we're in a restaurant and the server asks, "What would they like?", I look at the other person and ask, "What would you like?" and only offer to help if it looks like communication is really breaking down.

But if your husband wants you to be the one to communicate to begin with...yeah, that makes it more complicated. Don't feel bad about reinforcing stereotypes - you aren't the one making that choice. Your husband is. The only thing you can really do is decide how easy you're going to make it for him, by deciding to what degree you're going to facilitate communication for him in public. But that's a question involving a number of variables, and is one that only you can answer.

In any case, be gentle with yourself...caregiving is difficult work, and it's important to make sure that you take good care of yourself while you're doing it. Thank you for reading, and for commenting.

Re: The Downside of Assumptions

Kels — Tue, 19 Mar 2013 15:58:09 -0000

This whole phenomena gets worse when you add aphasia into the mix. When my husband and I go out to eat, he likes me to order for him. He's embarrassed by the way he speaks (or, rather, by the way he cannot speak) and so he'll let me know what he wants while the waiter is away (usually by pointing at the menu and I'll ask him yes/no questions about sides, changes, etc.), and I'll order for him. Not a big deal.

So, the waiter will come back, but instead of looking to my husband when he/she asks for his order, they look to me. They don't know that I was already planning on ordering for him - all they see is a guy in a wheelchair. Every once and a while someone will ask him, and he'll gesture to me and I'll speak for him, but most of the time I'm the default communicator.

I'm worried that this discourages my husband from attempting to communicate with others, because they obviously don't think he is capable of speaking for himself, but I'm not sure what I could do about it. Telling a waiter to ask him would be silly, because then he would just point to me anyway to speak for him. I don't want to reinforce stereotypes about the physically disabled, but putting my husband on the spot to speak in public seems just as bad.

I guess I lose either way.