Welfare Benefit Reform protest…London makes itself heard

welfare benefit reform

Wheelchairs chained in protest of Welfare Benefit Reform at Oxford Circus in London, England earlier today. The protest is still going on…Twitter says that over 200 people have shut down Oxford Street and are now on the move.  Traffic backlogged past Regent Street.

http://www.bbc.co.uk/news/uk-16771611

Rock on, London!  I’m with you in spirit!

 

welfare benefit reform

Comments are closed

Judge Upholds Order on Accessible Taxis in New York City

Meanwhile, from the “Accessible Taxis in New York City” file…

Despite a motion by New York City’s Taxi and Limousine Commission (TLC), Judge George Daniels’ freeze on the Commission granting medallions to non-accessible taxis remains in effect.

http://newsandinsight.thomsonreuters.com/Legal/News/2012/01_-_January/US_judge_to_Albany__NYC_taxis_must_comply_with_ADA/

New York seems determined to go down fighting on this one. Seeing as their relatively small number of accessible taxis (and the plan Bloomberg had previously proposed to meet taxi access needs for city residents that use wheelchairs) was found to violate the Americans with Disabilitiesaccessible taxis in New York City Act, one wonders why the TLC thinks that New York City should be above the law.

I was not aware that they had filed a motion to stay Judge Daniels’ order on accessible taxis in New York city.  It does seem in keeping with the arrogance, not to mention the disregard for the transportation needs of both citizens of and visitors who use wheelchairs, with which Bloomberg and his crew have handled the lawsuit over accessible taxis in New York City.

See the category called “Accessible Taxis in New York City” for previous blog posts on this story.

On a Brighter Note…

The Philadelphia Parking Authority (PPA), which also faced a lawsuit in July 2011over lack of accessible taxis, is currently moving much faster with its plan to create a totally accessible fleet than New York is. The city had no accessible taxis in July, and now has three, with plans for 300 by the end of the year. By 2016, Philadelphia will have 1600 taxis on its streets.

http://articles.philly.com/2012-01-22/news/30652935_1_accessible-taxis-wheelchair-accessible-cabs-medallions

Mayor Bloomberg, meet me at Camera Three…

(Which, for those of you who don’t watch “The Daily Show”, is what host Jon Stewart says when he wants to say something to just one person.)

I don’t live in New York City, so maybe I shouldn’t I be talking for New Yorkers that use wheelchairs. But I did have to use a wheelchair for over a year, and I struggled with the accessibility issues that came with it…and I’ve watched my own small town try to become more accessible for people with disabilities. I know that it doesn’t happen overnight. I know that there’s planning involved, and budgeting, and that sometimes it has to happen in bits and pieces, so that sometimes the ultimate goal *is* several years away.

I think that most people with disabilities understand this.  If you took a poll of your voters who use wheelchairs, I think they’d probably tell you that they’re not expecting you to make oodles of accessible taxis in New York city a reality overnight. They’re reasonable people.

But I think they do want to see some movement on the plan to increase the number of accessible taxis in New York city, because this is about more than transportation. It’s about knowing that their mayor values at least their vote enough to take their concerns seriously, and about knowing that their presence in New York and the contribution that they can make to their communities in valued regardless of disability.

Because if you don’t feel strongly about giving people with disabilities an easy way to participate in New York life – that sends a message that you don’t really want them involved in New York life. And that’s a terrible message to have to live with from someone that claims to be representing your best interest.

London has done this. Philadelphia is doing it. You can do it. New Yorkers know it won’t be overnight. But for God’s sake – get started.

Comments are closed

Doing a webinar with Martyn Sibley and guests today!

Today I will be part of a webinar that disability advocate Martyn Sibley has organized about employment and disabilities. I will be speaking about how volunteering can lead to paid employment.

The webinar starts at 1 pm GMT, which is 8 am EST…a little early for people in North America, I realize, but it will be worth it. Martyn has several guest speakers lined up.

Sign up for the webinar here:

https://t.co/OOxKq1UM

Hope you can make it!

 

Comments are closed

Rick Santorum Strikes Again

I Know…Again With Rick Santorum…

Rick Santorum

Okay, okay, I realize that I’ve been writing a lot about Rick Santorum lately. I’ve got a lot I could say about the rest of the Republican Presidential hopefuls as well, trust me – the prospect of any of them as US President makes me glad that I live in Canada, frankly. But Santorum always seems to bring it back to a disability issue, and this is a disabilities blog, so he just always gives me a lot to work with, bless his heart.

This time it’s his comments to Piers Morgan on Friday, January 20 about rape that have got me irked.

http://thinkprogress.org/health/2012/01/23/409242/santorum-to-rape-victims-make-the-best-out-of-a-bad-situation/

A Blast From My Past…But This Is Now

As I’ve said in this blog before, I used to be an evangelical Christian and pro-life. I was a teenager, and life was very black-and-white back then.

Life is one big blur of grey now. I know women who’ve had abortions for a variety of reasons – some of them have been raped. In my work, I’ve never had to support a woman with an intellectual disability who’s been pregnant because of rape, but I’ve been in a couple of positions over the years where I’ve had to help women with intellectual disabilities deal with a sexual assault. It’s heart-breaking to have to watch any woman come to terms with “Why me?” and to have to work through flashbacks, and through shame and guilt, and to help them change perceptions that what happened to them was somehow their fault. When a woman’s cognitive capacity to understand these questions and feelings is lowered, it can feel impossible to to help them out of the personal hell that a rape creates.

And yet, on top of this, Rick Santorum suggests that rape victims “make the best of a bad situation” if a rape results in a pregnancy and carry the fetus to term. I wonder if that’s what he’d want for his disabled daughter, Bella Santorum, if she were ever raped (not that I’d *ever*wish something so horrible on her or anybody)? To put that pressure on top of her, after everything that her body and mind would already be struggling to understand and process?

“Make the best of a bad situation” is just too disturbingly close, as commenter Jim Spice said, to  “Relax and enjoy it.”  And it’s too big a burden to ask of any woman, Rick Santorum, but particularly of those that may not be able to understand what has happened.

Now, that being said…if a woman with an intellectual disability is pregnant as a result of a rape, makes her own medical decisions, and says, “I want to keep the baby”…different story. Different story altogether.

Sigh

Rick Santorum…I want to write something nice about you. Promise American citizens something good regarding disability issues so that can I say something complimentary and then keep you out of my blog!

Comments are closed

A Bit of a Rant on Information Accessibility

Another Post About Information Accessibility

Earlier in the month I talked about information accessibility and about how sometimesinformation accessibility systems of getting information to people aren’t set up in a way that’s convenient or even comprehensible (http://www.girlwiththecane.com/information-accessibility/). I found the mother of all examples of this last Friday, and thought I would share it with you.

Ready to Start Driving Again

I’ve had a seizure disorder since my second stroke, caused by scar tissue left after the brain surgery. Because of the seizures, my driver’s license was taken away from me almost immediately after the stroke. In some ways, not being a licensed driver in a spread-out rural community without any public transportation has been just as difficult as learning to live using one hand, but that’s a story for another day.

I take anti-seizure medication, and am finally to the point where I’ve been seizure-free for over a year. This means that I can start the process of getting my license back again – under Ontario’s graduated licensing system, it takes two years to become a fully licensed driver. I decided to write the knowledge test that will let me drive on most roads, with some restrictions, as long as there’s a person who’s had their license for at least four years in the car with me.

Information Accessibility and Me

The nearest place to write the knowledge test is 45 minutes away, so I had to arrange to have my father drive me. I looked on the Ministry of Transportation website to see what ID I’d need to bring, but found information confusing. At one point it appeared that I just needed one piece, and at another point they seemed to want two. I called the phone number of the Ministry of Transportation office in the town where I’d be writing the knowledge test.

The rest of it went a little like this:

1. Voice mail gave another number for people calling concerning licensing *or* two extensions.
2. The phone number was for a bakery.
3. The first extension took me to Service Ontario, a government service centre that doesn’t know anything about licensing. The woman on the phone referred me to the website.
4. When I explained that I’d already been to the website and was confused by what it was saying, she said that I couldn’t ask the driving test people because there isn’t a line for the public to that office.
5. She went to the website to see if she could find the answer to my question.
6. Sensing at that point that I was really annoyed, she said it was a slow day, and she’d make some phone calls to see if she could get the answer and call me back.
7. Which she did. But she still only had speculation – no concrete answers.

Big Questions about Information Accessibility

I do appreciate the Service Ontario woman’s attempts to help me. I know that Service Ontario centres are generally very busy. And I understand that there’s likely no public line to the offices that do driver testing just because the employees don’t want to spend the day dealing with nuisance calls like mine.

But we’re back to the issue of information accessibility. You don’t have to have a high level of literacy to write the knowledge test – you can arrange to do the test orally. I’ve never supported someone with a developmental disability to get a driver’s license, but I know it’s been done. What if I couldn’t read the website? What if I didn’t have Internet access?

What if there’s a question that I just need a human being to answer?

At least the Ontario Disability Support Program takes a stab at information accessibility. Their reading material can be difficult to understand, yes. But there’s a direct phone line to them, with places for people to leave a message for their income support specialist, and the income support specialists have designated days where it’s more likely that you’ll reach them if you call. It may take them a bit to get back to you, but it’s always been my experience that they do (at least in my part of the province).

The government really needs to do some thinking about information accessibility. If government services are going to keep referring people to the Internet for information, there needs to be an overhaul in how the government views the Internet as information tool – websites need more plain speech and diagrams, simpler graphic user interfaces, and more intuitive processes. More public access to Internet is also necessary.

Or, they can put more human beings on the phones.

Which would ultimately be cheaper, I wonder?

Comments are closed

More on DLA Cuts and the Spartacus Report

I’m linking to this blog post because I think it shows a bit better Spartacus Reportthan I can explain what is happening with the proposed Daily Living Allowance (DLA) cuts in England.  The Spartacus Report was written to show how necessary it is to keep funding at its current levels.

Scary Stuff

This post was really eye-opening for me. For many, this struggle is a matter of life and death…and when you the numbers behind it, it really is an outrage.

http://theoccupiedtimes.co.uk/?p=2147

I plan to do more reading about the proposed DLA cuts and the Spartacus Report this so that I can comment more thoroughly and with a greater level of understanding.

Comments are closed

Bob Marshall and Why I Won’t Give Up

Now, before anyone gets the wrong idea as I address remarks made by Virginia State Delegate Bob Marshall in 2010…

I am not anti-Christian or anti-religious. Yes, I was raised a Christian and bob marshallchoose to no longer affiliate myself with that belief system, but I choose (as much as possible) not to align myself with any belief system. I have devout religious friends, including Christians, for whom I have a great deal of respect and affection…but I’ve also encountered attitudes from religious people, including Christians, that make me very sad, and sometimes very angry. I read about some of those attitudes from Bob Marshall this week.

Nature’s Vengeance

This goes back to a press conference in February 2010 against state funding for Planned Parenthood (still an issue for many politicians in this election season, by the way). Why bring up remarks from 2010? Because beliefs like these simply have no place in the 21st century:

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children. In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There’s a special punishment Christians would suggest.”

Read the full story here: http://thinkprogress.org/politics/2010/02/22/83337/disabled-abortion/?mobile=nc

Sarah’s Anger

I’m a very patient, non-judgemental person. You have to be, in my line of work. But when I read statements like this…my heart starts to race, and I can feel the tears starting to build up behind my eyes, and my breathing starts to become ragged. Comments like this stay with me. I ponder how illogical they are, how scientifically unsupportable…

And eventually I cry over them, because I wonder how people with disabilities can ever hope to be regarded as equals, or hope to live a life of dignity and respect and full participation in community life, when there are still people out there that view them as a punishment.

Bob Marshall Will Not Stop Me

Sometimes when I hear comments like the ones Bob Marshall made, I wonder why I bother being a disability advocate and trying to make things better for people with disabilities. But then I’ll get a phone call like I did tonight, from a young man with an intellectual disability that I helped to get on his feet after he graduated from school. He just wanted to say hi. But hearing how well he was doing, and knowing that I had helped to get him to that point, made me feel like there’s good in fighting for these people that are *not* mistakes or punishments, no matter who says so.

I will not let Bob Marshall or anyone else take away my conviction that everyone has value in this world, not just the people who are “able”. I refuse to believe that the world…or God…operates that way.

Comments are closed

Amelia Rivera Needs a Kidney Transplant

Amelia Rivera Needs a Kidney Transplantamelia rivera

So, as of Monday, the Children’s Hospital of Philadelphia (CHOP) had contacted Amelia Rivera’s family to talk about a kidney transplant for the three-year-old girl, according to CBS-Philapelphia.  But the donor kidney will not come from the transplant waiting list, (although the Huffington post says that the hospital appears to have changed its original position that it wouldn’t perform the transplant surgery.) (http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/.)

Amelia Rivera has Wolf-Hirschhorn syndrome, a developmental disability that causes intellectual disability and distinct facial features, and that can cause seizures, heart defects, and other serious health concerns.

The controversy stems from mother Chrissy’s post on a Wolf-Hirschhorn support blog. She talked about how a doctor at CHOP told her that Amelia would not be considered a candidate for kidney transplant because she was “mentally retarded”. When the news hit the Internet, people were outraged, and an online petition was created that now has 24 000 signatures.

The Case Against Putting Amelia Rivera on the Transplant Waiting List

Lisa Bilkin of the Huffington Post wrote a reasoned, unemotional (but not uncaring) column about why Amelia Rivera should not get the kidney. And if she can get me to see her point of view on something like this, she’s made her point well. The kidney will most likely only prolong Amelia’s life, not save it. The transplant and recovery process will be difficult, and the outcome is uncertain given her other health issues. Given the scarcity of donor organs, especially for children, from the standpoint of the organ donation system, there are simply better candidates. And in this context, the doctor was likely using “mentally retarded” as diagnostic criteria. The most sensitive choice of words, given the situation? No. But likely not meant to be as insensitive as it sounds like it was. http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html

All of this is certainly cold comfort to the Rivera family. Which is why I’m glad the Huffington Post also posted the other viewpoint.

The Case for putting Amelia Rivera on the Transplant Waiting List

Susan Senator’s take on Amelia Rivera’s situation is that it’s another manifestation of what she’s seen time and time again in the life of her son (who has autism): people with disabilities are still seen as inferior. Despite CHOP’s insistence that it doesn’t discriminate on the basis of disability, ultimately it’s Amelia’s disability that *is* determining whether or not she gets put on the waiting list. And perhaps Bilkin is right in that this is “the way it is” right now…but I agree with Senator’s assessment that it *should* be different, and that we have a responsibility to work toward leveling the playing field. Because, as Senator says, it shouldn’t be up to doctors to decide whether this little girl’s life is worth less than someone else’s based on her cognitive capacity and speculations on the outcome and/or her potential quality of life after the transplant. Doctors are not always right. People should be given a chance at life regardless of disability. http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html

A Confounding Variable

I had signed the petition to get the hospital to put Amelia Rivera on the transplant list before I read either of the Huffington post commentaries. However, Bilkin’s commentary brought some information to light that I wasn’t aware of, and that I think makes the hospital’s claim that this isn’t a case of discrimination even more suspicious.

Chrissy Rivera told Bilkin that the family never wanted Amelia put on the transplant list. They wanted to give her a kidney themselves, but were told by the hospital that it wouldn’t perform the transplant surgery. Bilkin ran this by pediatrician and geneticist Kurt Hirschhorn, who said that there was no reason for the hospital not to perform the transplant surgery in that circumstance as long as the donor fully understood Amelia’s situation.

The hospital had changed its position on performing the surgery on Sunday night when Bilkin called the family. But the outrage about not putting people with disabilities on the transplant list continues to build.

Proper thing. I’m putting the commentaries by Bilkin and Senator out there as a call for change. Please go read them, think about them, and think about what you can do for families in situations like the Rivera’s…it could be as simple as signing your name.

And if you’d like to digitally sign the online petition to have Amelia Rivera put on the transplant list, here’s the link: http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

More about Wolf-Hirschhorn syndrome: http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome/

Update, Jan 21: Sunday Stilwell has notified me via comment that CHOP hasn’t actually changed its mind on whether it will perform the transplant surgery. This is very disappointing news.

 

Comments are closed

Sexual Assault and Disability: Behind the Eight Ball

I was watching an episode of “Law and Order: SVU” this weekend. You may remember from sexual assaultother posts that this particular television show, even among those within the “Law and Order” franchise, challenges me (and often disturbs me) like few others. This episode involved the sexual assault of a young woman with a mental condition.

Sexual Assault and Disadvantaged Groups

In this episode, a young man in an inpatient mental health facility witnesses a female resident being sexually assaulted by a staff member, prompting an investigation by the Special Victims Unit. Their investigation reveals that the assailant isn’t on staff at all. He’s the girl’s uncle, sneaking in disguised as a doctor, using an ID lifted from a staff member. The young woman is 24. He has been raping her since she was 14.

The SVU detectives talk to the young woman about to whom she disclosed the abuse when she was a teenager, and about why nothing was done at the time. It appears to be a case of a family in denial, not wanting to believe that an immediate family member could do something like that. When one of the detectives promises that the uncle will never touch her again, the young woman just laughs and says that there’s no way that will happen.

“Why?” the detective says.

“Because,” the young woman says. “He’s sane and I’m crazy.”

How often does that happen?, I wondered. How often does it happen that someone makes an allegation of sexual assault and the people around them say, “Well, he’s crazy…it’s him imagining things again,” or “She’s retarded…she misunderstood.” or even, like in the some of the New York state group homes that are coming under scrutiny, the caregivers just didn’t give enough of a damn to even call the police even though they knew that they should.

“Reliable Witness” and Sexual Assault

I know that these things happen. I’ve talked to people with disabilities who have told me about abuse and then said, “But I told people and they didn’t do anything, so why should I tell anyone else?”

I also know that there are very good reasons why some people with mental conditions and intellectual disabilities don’t make reliable witnesses when it comes to making sexual assault allegations. Their stories fall apart under scrutiny, or details come out that make authorities suspect that an encounter was actually consensual…even when it still might not have been. People with developmental disabilities specifically may have made an allegation using the wrong terminology but some sort of assault still may have happened.

It can become very sensitive, involved work, to untangle all the threads, and figure out if there’s actually an assault allegation there on which people need to move when the witness seems “unreliable”, particularly if a disability complicates the issue. But it’s especially when a disability complicates the issue that the appropriate professionals need to be brought in, to ensure that the sensitive, involved work is done. The concern should be with ensuring something really didn’t happen before the person is labelled an “unreliable witness” and the case dropped on that basis. These cases can simply too complicated to let that happen, and no one should feel that they’re at a disadvantage at a sexual assault trial because of a disability.

Accessibility in the Judicial System

The judicial system is already a daunting place for people with mental conditions and intellectual disabilities (or both). It’s intimidating, the questions are difficult to understand, the rights of the people involved are difficult to understand and the processes aren’t intuitive. We need advocates to help the judicial system become more accessible for those whose disabilities affect how they experience life and how they communicate those experiences to others – and to mitigate the experience of feeling like they’ve lost before the trial has even begun.

More on sexual abuse of people with disabilities:

http://calcasa.org/wp-content/uploads/2010/12/Survivors-with-Disabilities.pdf

 

Comments are closed

Cultures of Inclusion

As we move into a society where creating cultures of inclusion for people with disabilitiescultures of inclusion becomes more and more important, administration of social institutions in particular need to remember two words: top-down.  It’s all about creating cultures of inclusion that start from the very top of the organizational hierarchy and pervade the entire organization, touching the person at the very bottom of the hierarchy.

*Your* Part in Creating Cultures of Inclusion

“You set the tone,” Dr. Greene (Anthony Edwards) said to young Dr. Carter (Noah Wyle) in the opening episode of the long-running “ER” series. This is true. We do set an example for others by how we interact with people with disabilities in all areas of life: at work, church, on the street, in the grocery store, at our kids’ hockey games, in PTA meetings…wherever we are. Chances are that if you’re in a group, someone there has some sort of disability, even if it isn’t visible.

Management’s Part in Creating Cultures of Inclusion

In organizations, though, management has an extra responsibility to “set the tone”. The phrase “culture of inclusion” describes an atmosphere where the staff in organizations and the people that they serve are comfortable with the fact that people are different and where people are treated with respect and dignity, as full community members, despite their differences. Good managers are aware of the legislation surrounding disabilities and hiring practices and know the advantages of having a diverse staff.  When managers embrace the ideals of cultures of inclusion, it filters down in their policies, the day-to-day of the organization, and the way the organization, whether profit or non-profit, serves the community.

Schools and Cultures of Inclusion

School administrations in particular can have a powerful effect by creating cultures of inclusion among students. Special education programs have been hit hard with budget cuts, and many students who would have had classroom Educational Assistant support in the past will not get it now. But perhaps this will spur educators to think outside the box about the nature of supports that students actually need:

  • Given the intensity level, frequency and duration of support that a student needs (not to mention what subjects interest them and what they’d like to do after graduating!), do they really need an EA?
  • If the student has an intellectual disability and is low-functioning (for lack of a better word), are there some classes that might interest them as an observer? A music class? A gym class?
  • Could volunteer students from the school go with some of the students in segregated special education classes to noon hour events?

Everyone can benefit from seeing students with disabilities participate in school events, and students with disabilities, especially those in segregated special education classrooms, often welcome the opportunities to meet other students and make new friends. In some schools, there isn’t much of a chance for anyone to get to know students in segregated classrooms, and that doesn’t promote cultures of inclusion.  Positive relationships with people with disabilities as children and young adults is going to carry over into adulthood for students without disabilities. Also, these relationships enrich the lives of people with disabilities. Particularly for people with intellectual disabilities, they’re an opportunity to try new things and learn valuable interpersonal skills. It’s very important that school administrators create opportunities for these relationships to happen.

Even cultures of inclusion that seems forced at first can develop into something more organic and spontaneous, and can benefit everyone.  Read about the Heads Up for Inclusion project, which focused on developing cultures of inclusion in several Ontario schools:

http://www.headsupforinclusion.ca/index.php?option=com_content&view=article&id=3&Itemid=5

So, managers, remember…top-down! *You* set the tone for your organization when it comes to how people with disabilities are treated.  Set a good one.

Comments are closed

Stop Copying Plugin made by VLC Media Player