Manatee County “Interpreter” Signs Nonsense ASL at Hurricane Irma Press Conference

I’m surprised that it took me until early this week to hear about this story, because it does appear that it was covered by several media outlets. But here we are. I only heard on the September 19th edition of The Daily Show that Manatee County in Florida fucked up with its ASL interpretation during a televised press conference designed to get evacuation information out to citizens just before Hurricane Irma hit.

Content Note: Ableism, Weather Emergency, Emergency Planning, Privilege, Classism, Disrespect, PWD as an afterthought

Young white woman wearing a orange shirt holds her hands in front of her, just above chest level, palms facing her with her thumbs up and fingertips almost touching. Her nail polish is orange, and her hair is strawberry blonde. She is smiling. Keyword: Manatee County

Image Description: Young white woman wearing a orange shirt holds her hands in front of her, just above chest level, palms facing her with her thumbs up and fingertips almost touching. Her nail polish is orange, and her hair is strawberry blonde. She is smiling.

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Seriously, Florida?

It’s this sort of thing that makes disabled people one of the most vulnerable groups in America when it comes to weather emergencies, as I’ve written about before.

The issue isn’t that Manatee County didn’t think about providing ASL interpretation, as you can see in this video. The person who uploaded this video captioned it with what the interpreter is signing, and I think it’s clear what the main issue is.

But for those who don’t want to/can’t watch the video…the issues are:

This is unacceptable and infuriating, for a few reasons.

To Start…

Certified interpreters were available. Florida Governor Rick Scott used interpreter Sam Harris:

Sarasota County also used a qualified interpreter at its news conferences.

VisCom, a company that has provided Manatee County with interpreters in the past, wasn’t called about providing services for Hurricane Irma communications. Charlene McCarthy, the founder of VisCom, had offered to send in an interpreter for a September 9 press conference in Manatee County, but her offer was declined; no interpreter was used for that press conference.

For some reason, Manatee County decided not to use an interpreter. It’s not as if no one was anticipating the need for a press conference; the media started talking about Irma and where she would at least potentially hit just after Hurricane Harvey landed.

Meet Me At Camera Three, Manatee County Administration

All this brings one word to mind: afterthought. Deaf and hard-of-hearing people were an afterthought as you prepared to get potentially life-and-death information to your residents about a weather emergency. Think about what it must feel like to know you’re an afterthought.

It’s this half-ass attitude toward accessibility that continues to give disabled people the impression that their communities of residence don’t value their money, skills, desire to give back to their communities, or (in this case) even their lives. Go ahead and deny that this was the message you meant to send, Manatee County – it’s the message that you *did* send, with your failure to take simple steps to ensure that Deaf and hard-of-hearing people in your communities got the same access to the life-and-death press conference information that hearing people did.

You owe your Deaf and hard-of-hearing communities an apology, and a promise that this won’t happen again.

And for Those of You Who’d Tell Me…

You know who you are, you keyboard warriors.

Yes, you. The ones making comments like these on the internet coverage:

  • Deaf people activate CLOSED CAPTIONING on their tv sets. I guess numbnuts in government and around the country are unaware of that secretive tidbit of information. They also get text messages, emails, instant messages and communications from each other/family and read local news. They can translate audio to text. It’s not like a reeetarded interpreter is their only source in the year 2017. Duhhh
  • “I think what is shocking is that in 2017, taxpayers have to pay for that nonsense. they practically give away voice to text software, and there are plenty of free apps that would instantaneously give the devil a much more complete picture of what the officials are saying…Shameful waste of money.”
  • “Considering the few people who require this, it was a waste of time anyhow”
  • “Reminds me of the fake sign language interpreter at Nelson Mandela’s Memorial, standing right next to Barry O and flailing about – that was quality comedy!”

Listen, folks. There are whole bunch of reasons why these comments are disgusting, but I don’t even need to get into them, because they’re all invalid for one, simple, legal reason:

Title II of the ADA dictates that “state and local governments must ensure that their communications, including emergency communications, are fully accessible to people with disabilities.” 

Accessibility is the law, and it’s been that way in America for 27 years. End of story.

But the fact that people felt comfortable letting fly with that sort  of ableist (not to mention classist, in some cases) shit  in the comments section of a story about how Manatee County’s lack of preparation meant that a group of disabled people didn’t get emergency information about a Category 5 hurricane….well, it made me feel ill. I wanted to draw some attention to it.

That sort of willful ignorance about the challenges that disabled face from the people in their  communities – well, it’s beyond disappointing.  It’s gross, really.

Seriously, America. Grow up.

Canada continues to send its thoughts and prayers for those affected by the recent hurricanes…

Interesting article on captioning vs ASL

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FDA to Ban Electrical Stimulation Devices used at Judge Rotenberg Center – Public Comment Invited

Two years after a federal advisory panel met to discuss the Judge Rotenberg Center’s use of electrical stimulation devices in behaviour modification protocols, the Food and Drug Administration has announced its intent to ban the devices. This is something a lot of people (including a past employee of the Judge Rotenberg Center) have been waiting  a long time for.

Content Warning: Torture, Abuse, Aversive Skin Shocks

"JRC" in navy letters behind a red circle with a slash through it. Underneath. in black letters: "STOP The Torture! Close It!" Keyword: Judge Rotenberg Center

Image Description: “JRC” in navy letters behind a red circle with a slash through it. Underneath. in black letters: “STOP The Torture! Close It!”

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The Judge Rotenberg Center is a facility for children in adults with developmental disabilities. It is located in Canton, Massachusetts, and has been open since 1971. It employs a number of controversial behaviour modification practices, but the most controversial by far is the use of aversive skin shocks delivered via devices called Gradual Electronic Decelerators in response to self-injurious or aggressive behaviour. Judge Rotenberg Center is the only place in the United States that still uses aversive skin shocks to condition behaviour.

Judge Rotenberg stands by its use of aversive skin shocks as an alternative for individuals for whom no other treatment is working, and insists that individuals and their families depend on it. But significant questions surround the use of the practice:

This is just a partial list. For more, read my last post on the Judge Rotenberg Center or visit Lydia Brown’s blog.

The meeting of the federal advisory committee about the Gradual Electronic Decelerators and the aversive skin shocks was a chance for both those for and against their use to make a thorough case. The meeting was in front of the FDA, in order to help them make a decision about the GEDs and the use of aversive skin shocks.

Click here to read the transcript of the FDA meeting, including testimony by autism activists Lydia Brown and Ari Ne’eman

This 126-page report also came out of the investigation into the GEDs and use of aversive shocks.

Judge Rotenberg Center – If I Had My Way…

Even if you haven’t read my past writing about the Judge Rotenberg Center, if you know anything about me I think you can likely predict where I come down on the use of electric shock as behaviour modification on anyone. I’m not an expert on conditioning, but I know enough about it…and behaviour modification programs…and basic human rights and ethical treatment, for God’s sake…that I know that even when there seems like no other alternative, delivering a skin shock to get a person to stop an “undesired” behaviour is totally unacceptable from an institution that claims to be providing support services.

Totally fucking unacceptable and something that we should not be condoning implicitly or explicitly. I’d love to see the Judge Rotenberg Centre closed down tomorrow, and think it should have been closed down years ago.

Seeing them get their electric toys taken away?

It’s a damn good first step.

The FDA Wants to Hear From You

On April 25, 2016, the FDA issued its Proposal To Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.   The Summary states:

The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

This is not an official ruling. It’s a proposed rule that outlines why the FDA wants to bans electrical shock devices, and it’s very thorough – definitely worth reading, especially since the FDA is inviting public comment on the proposed ruling until May 25, 2016, with a specific request for comment on their proposed effective date. Comment can be provided in a variety of formats, and information on how to submit comment is listed on the Proposal.

If you have an opinion on this issue, now is the time to make it known! Remember, the Judge Rotenberg Center is presently the only entity affected by this ruling – when the electrical stimulation devices are banned, the facility cannot use them anymore. Ever.

Speak your mind to the FDA, and let’s get this chapter closed.

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Thoughts on Inclusion and Intellectually Disabled People

Shiny green push button with shiny grey border, "inclusion" in uppercase black letters across button. Keyword: intellectually disabled people

Image Description: Shiny green push button with shiny grey border, “inclusion” in uppercase black letters across button.

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Recently, in an internet  discussion group to which I belong, we were debating all things inclusion for intellectually disabled people.

Inclusion vs. Segregation for Intellectually Disabled People

It was an interesting experience for me, because I’ve never really heard people defend the argue the idea that moving toward community-based housing and employment and out of institutions, group homes and sheltered workshops potentially violates the ideals of person-centred planning, and that institutional residential and employment arrangements aren’t segregated…that they are, in fact, a better option for intellectually disabled people than more community-based alternatives.

I was one of the ones arguing in favour of more inclusive practices when supporting intellectually disabled people, which probably doesn’t shock anyone. Out of the three of us “inclusion types” that were talking the most, though, I was definitely the moderate one. Maybe it’s because I’ve worked with a lot of parents and seen how scared they are for their intellectually disabled childrens’ safety once they leave the home, that the constant supervision of a group home or even a more institution-like setting (Ontario doesn’t have institutions anymore, but I understand that other areas still do) becomes attractive. I can see the other side, while still firmly coming down on the idea that it’s more desirable that all disabled people , including intellectually disabled people, be as much a part as the community as possible, and that institutions, group homes, and sheltered workshops tend to work against that.

The Argument Against Community-Based Placements for Intellectually Disabled People

But, said the people arguing the other side, what if people are more comfortable in those environments and they don’t want to leave? You are taking away their choice. You are telling them, “Inclusion is the right way, and you’d better get on board, even if it means leaving your home/workplace and your friends and all the things that make you feel comfortable.” It wasn’t about segregation, they argued. It was about really listening to intellectually disabled people and what they wanted out of life.

And wow, did it ever take off from there.

We got into questions of whether people can actually make an informed choice if they haven’t experienced the alternatives, whether social systems stream intellectually disabled people into segregated settings and when that starts if people do believe that it happens (I do believe it happens, practically from the time that a child is officially identified in school as having an intellectual disability), whether disabled people having other disabled friends is “inclusive”, and medical intervention versus “warehousing” when a person does have to spend time in an institution. We talked about caregiver rights. It got heated, sometimes a little nasty. People were very passionate about their positions.

The other, less moderate gentleman and I tried to explain our positions on all this several times, but I didn’t feel like I was being understood…I’d venture a guess that the people on the other side of the debate were feeling the same way, from the tone of the discussion, but it seemed to me that we were all ultimately working toward the same goals. I was puzzled as to where we were going sideways.

What I Do Know – How I Support Intellectually Disabled People in My Work

I’m not interested in fixing a situation that isn’t broken to begin with, including moving someone out of an institution, group home, or sheltered workshop if they haven’t indicated that they’d like to move and they’d like my help to do so.  There are some situations where, unfortunately, people have to move out of places because of issues related to safety and violations of rights, like when people were moved into community settings when institutions started to close in Ontario, or when medical issues arise that require specialized interventions that can only be delivered in a hospital or, say, inpatient mental health services setting, or when families are in crisis to the point where they can’t care for an intellectually disabled family member anymore and that individual must by necessity take the first placement that opens and wait there for a more suitable one.  These are tough situations, involving the health and well-being of the individual, and sometimes that has to take priority over whether a placement is community-based.

However, how can a person truly answer, “Do you want to continue living in a group home or live (or work toward living) in your own place?” or “Do you want to stay at the workshop or try to get a job somewhere else?” if they’ve never experienced anything but living in a group home or working in a sheltered workshop (or at least never had it explained to them that there are different ways that people live and work than what they’ve experienced and that they have to right, as citizens, to try these things if they want?) Maybe it doesn’t happen tomorrow, because maybe there are skills that need development and supports that need to be put in place…maybe it takes a long time to work up to being ready to live independently…and maybe it even doesn’t work the first time out because it’s too overwhelming…

But intellectually disabled people should have the right to take risks, and it’s not the worst thing in the world for them to experience disappointment. And you never know – what you think is going to turn out terribly (and I’ve been there in my work, when an intellectually disabled person that I support has announced intentions to do something and I’ve just wilted inside, thinking, “Wow, there’s no way this is going to work”) may actually turn out wonderfully for all involved. I’ve seen this happen too.

One interesting thing I noticed about this discussion was that sometimes it felt like each side was criticizing the other for the same thing:

  • There are too many rules and the individual doesn’t get to make them
  • People fall through the cracks and that leads to bad service and potential abuse

I took two classes on person-centred planning for my Developmental Services Worker Diploma, and have been exposed to it as a philosophy of support for as long as I’ve been in this field (over half my life). I’ve never taken it to mean that it’s about making choices for people, or even influencing them a certain way. Yes, it’s unfortunate that intellectually disabled people (all disabled people) are at the mercy of whatever current trends are shaping the services that they use, and if that means that means that a person has to leave a group home or sheltered workshop (or move into a group home or institution setting if you’re living in England, or even in Canada – loss of control is a theme for disabled people the world over, it just manifests in different ways sometimes), but when I worked with youth I told them:

“We’ll talk about what your options are, we’ll make a plan, and then we’ll talk to the people who can put the plan in place. If you ever want to change the plan, just say so, and we will. This is your life.”

Part of the process was, “If you don’t like doing something that we’ve set up, tell me, and it doesn’t go any further. It stops there.”

The individual always set the course. Why wouldn’t they? It was their life, not mine.

When families are involved, that kind of process is difficult.  It takes a bit of negotiation sometimes, particularly if the person was under 18 and not considered an adult. In the group discussion, I didn’t get into how my first responsibility was to the individual, not the family (with some exceptions dictated by legalities around age). It didn’t seem like a discussion that would be welcome among parents in the group.

I don’t use a specific person-centred planning tool, but I use the methodology, and didn’t understand the objections to it in the discussion.

And if you want to argue that people don’t fall through the cracks and that abuse doesn’t happen in residential settings, then I’ve got a long list of articles that you need to read.

I left the conversation when it was obvious that it was getting personal and not going much further, but not before I posted this:

I don’t know whether it was this thread or another that I wrote about Special Olympics, but I’ll say again that my experience of it is that intellectually disabled people get told, “This is a great chance for you to play sports” when some of them could definitely play sports on a level that would allow them to comfortably compete on a community league…certainly much better than I ever did before I acquired disabilities. I understand the reasons why people like SO, and it’s certainly a valuable program, and even if people can play in community leagues and would rather stick with SO for their own reasons…go for it. But people have the right to know all their options, if they’re interested in playing sports…that they have the right, as all community members do, to try community league play if they want, instead of having people assume that because they’re disabled, they “belong” in SO and that it’s the option they’d choose, so no others need to be talked about… but as far as whether people choose to associate with other disabled people, or non-disabled people, or a mixture of both, or hang out by themselves…not my call to judge their choices or to presume to tell them their choices are wrong. I just let them know what their options are and, if they want/need the help, assist them to set it all up (assuming I ever get work in this field again). Does that make sense?”

 

I think that there will always be some intellectually disabled people who require a level of care that’s more institutional in nature than inclusion advocates like me would like, because of specialized needs. I also think that there are ways of increasing agency and self-determination within these settings for providers who are really committed to doing so, and that the population who really requires this level of care is smaller than we assume. The thing that really bothered me about the arguments against community based-supports was that they seemed to minimize the fact that intellectually disabled people have rights – not rights that can be ignored or tweaked because of the individual’s disabilities to fit others’ needs, but rights that they have by virtue of being adults in our society.

We need to get back to presuming competence and finding ways to allowing intellectually disabled people to make truly informed life choices, not letting ourselves be afraid of individuals potentially making bad decisions.  We need to be okay with the lives of people we support getting a little (or even a lot) messy as they learn about being a community member and the rights and responsibilities that come along with that.

Ultimately Agreeing, But Still So Different

The thing that we all agreed on this discussion? That disabled people in general and intellectually disabled people in particular should drive the discussion in which services develop and change, and that they should have as much input as possible into that change process. I feel like we all had a lot more in common than anyone would guess at first guess. Just drastically different ideas of what that should look like, which was perhaps the most frustrating thing of all about the whole discussion.

Thoughts?

 

“Disturbingly One-Sided” – Annette Corriveau and the Right to Kill

I wondered why I was hearing Robert Latimer’s name recently. It turns out that on Friday there will be vigils around the United States, in cities including New York, Washington, Chicago, Boston, Tampa, Fla., Fort Worth, Texas and Portland, Ore.,  for people with disabilities who have been killed by their caregivers. But it’s been the profile of Annette Corriveau on “16 x 9”, a program run on Canada’s Global Television Network, that’s put Latimer (and the question of “mercy killing” for people with severe disabilities) in the spotlight in Canada again.

Content Warning:  Parent killing disabled child, parent fighting for right to kill disabled children, institutionalization, ableism

Large yellow happy face icon, with a lopsided frown and furrowed eyebrows. Keyword: Annette Corriveau

Image Desciption: Large yellow happy face icon, with a lopsided frown and furrowed eyebrows.

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For those that don’t know Robert Latimer, he was convicted of second degree murder when he put his daughter, Tracy, in the cab of his pick-up and killed her using carbon monoxide. Tracy was twelve years old and had severe physical and intellectual disabilities due to cerebral palsy. Robert, convinced that she was in unendurable pain, said that he didn’t want her to have to deal with it anymore. Normally a second degree murder conviction carries a life sentence in Canada, but he was released from prison with life on parole in seven years.

Annette Corriveau, according to “16 x 9”, is very much where Latimer was when he made the decision to kill Tracy. She wants to right to kill her two adult children, Jeffrey and Janet, both living with severe disabilities due to San Filippo syndrome and institutionalized for most of their lives. She made the decision that this is what she wanted to do when it became necessary to feed them via feeding tube so that they won’t choke. She doesn’t believe that they would choose to live like this, so she would like the legal right to end their lives.

Annette Corriveau and Robert Latimer Got to Speak…

I get that it’s very difficult to watch your child’s health and abilities keep deteriorating, especially when they’re in pain. Tracy was having seizures that routinely disconnected her hip. It had to have been terrible.

And I know that there’s little support in every way in Canada for caregivers of people with disabilities. There’s very little respite money or opportunities available. Supports are being cut back everywhere. The struggles are difficult to talk about. It’s a tough, often thankless job.

Additionally, for parents who are looking after children with severe disabilities, there’s always that mourning for the dreams that they had for the child. That’s why I’ve always liked “Welcome to Holland”, a story with which I’m sure many of you are familiar.

I recognize that this sort of parenting is very difficult, and empathize with the parents. However…

Who Speaks for Jeffrey, Janet and Tracy?

The “16 x 9” profile was, as anti-euthanasia activist Alex Schadenberg said, “disturbingly one-sided” . It was riddled with ableist language and assumptions. The staff that work with Jeffrey and Janet on a daily basis, that would be able to testify to the ways in which they communicate, were not interviewed.  The reporter did not challenge Annette Corriveau at all on her conviction that her children do not want to live the way they are (just because she felt that she would not choose to live if she was living that way), or ask if she’s worked with the facility in which they live to take steps to make their lives more “bearable”.

For example, it was brought up several times that Janet has not left the facility in over 20 years, but the reporter never asked Annette Corriveau if she’d worked with the facility to try and arrange some trips out into the community.

The documentary obviously took the stance that what had happened to Jeffrey and Janet was horrible and that no one could blame Annette Corriveau for thinking the way she was, like she was the victim of some cosmic tragedy that no parent should have to endure…and therefore jusified in stopping her pain in whatever way she could.  After all, as the reporter pointed out, more than half of Canada and most of the jury actually supported Latimer’s actions while the trial was going on.

I find all of this profoundly disturbing.

Reporter: “Is any of this about you?”

Listening to the interview with Annette Corriveau, and the interview with Latimer that was included in the segment, I had no doubt that these parents love their children. But I don’t buy that Latimer killed Tracy (at least solely) to ease her pain, or that Annette Corriveau wants to kill her children out of concern that they wouldn’t want to live that way. I think it’s more about parents that can’t stand dealing with the pain that their childrens’ “suffering” causes *them*. And when you don’t know how much someone is actually suffering, or what they’d like done about it (in Tracy’s case, at her age, no responsible clinician one would even have thought of asking her “Do you want to die?” if she’d not had an intellectual disability)…it’s just plain wrong.

Ask, don’t assume.

All people deserve the dignity of making their own life choices. No matter how *you* feel about what living their life must be like.

I can only be empathetic with the Robert Latimers and Annette Corriveaus to a point, and frankly I’m glad for it.

The whole “16 x 9” segment is available for viewing here

See the Council of Canadians with Disabilities’ response to the program

 

 

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