I am an Autistic disability rights activist. I blog, write articles, and speak on disability rights, autism, Autistic parenting,and other things. It's International Autism Acceptance Year, 2012-2013. Check out the Autism Acceptance Day blog here: http://autismacceptanceday.blogspot.com/ ALL MATERIAL COPYRIGHTED; permissions granted ONLY upon request.
The Virginia Coalition of Students with Disabilities has issued an action alert.
Steps to take for individuals and organizations are below. Complete
commentary is at the link at the bottom of the page. Please take a
minute and write to BOE@doe.virginia.gov using the template here, or writing your own comment.
Action Needed to Protect Children in Virginia from the Use of Restraint, Seclusion and Aversives
The Virginia State Board of Education is
considering proposed Regulations Governing the Operation of Private
Schools for Students with Disabilities. These regulations would govern
the use of restraint, seclusion, and aversives with children
with disabilities. As currently drafted, they would permit practices
that can injure, traumatize, and even kill students. They would permit
dangerous and cruel aversives that harm students. They would allow
prone restraint and other restraints that impede
breathing. They do not fully protect parent's right to know or to be
able to have a debriefing where they work with the school to make
changes. Children have died and been injured in restraint and
seclusion. They are so dangerous that they must be limited
to emergencies where they are absolutely necessary to protect someone
from physical harm. But the proposed regulations have ambiguities that
would permit their use in other situations.
The Virginia Coalition of Students with
Disabilities is urging people with disabilities, family members and
other advocates to share their views with the Virginia Board of
Education. The Coalition has developed the attached public comment
on the proposed Regulations.
INDIVIDUALS We are asking individuals to write to the Board of Education at
BOE@doe.virginia.gov and send the one paragraph email below to them. Or write your own letter sharing your concerns with the Board of Education.
I support the comments of the Virginia Coalition
of Students with Disabilities regarding the Virginia Department of
Education's proposed Regulations Governing the Operation of Private
Schools for Students with Disabilities. As currently
drafted, the proposed regulations could allow dangerous restraint,
seclusion, and aversive practices that can injure, traumatize, and even
kill children with disabilities. The GAO has documented the deaths of 20
children from restraint; other children have
died and been injured in seclusion. The regulations should ban
restraints that threaten life or impede breathing, including prone
restraint. Restraint and seclusion should be used only in emergencies
where they are absolutely necessary to prevent physical
injury to someone. They should never be part of student's behavioral
plans. Parents should receive oral and written notice of their use, and
be part of a debriefing process. Restraints should never stop children
from communicating medical distress. VDOE
should restore the initial proposal to ban aversive stimuli—such as
chemical sprays, electric shock, placing children in freezing cold, and
excessively loud noises. Aversives are painful, inhumane, and should
never be used. Please protect children with disabilities
from these dangerous practices and adopt the Coalition's comments.
ORGANIZATIONS We are asking organizations (state,
national, or local), to write a letter to VDOE and to also sign the
Coalition's comments. Our comments will be going to the members of the
Board of Education and the Superintendent. We
would like to have a number of organizations signed on to show the
strong support for our comments. Please go
to sign on to the Coalition comments. This site allows us to download
sign-ons into an Excel spreadsheet. Please sign on as an organization only
if you are authorized to
do so. Your organization will be included with the Coalition’s
comments if we receive your response by Tuesday, May 21, 5pm.
This survey Monkey sign-on is only for organizations. It is very
important for individuals to send an email directly to the Board
of Education. Your views as constituents are important and they need
to hear directly from you.
Thank you for your action on this important issue.
ALERT: Virginia wants to ALLOW ABUSIVE restraints, seclusion and aversives. PLEASE respond to this. Final action is May 23. NOTE: I am updating this article by posting part of the Virginia Association of Independent Specialized Education Facilities (VAISEF)position paper on the proposed regulation changes. The link to the VAISEF position is here, and you can then look at the pdf from VDOE to see for yourself which schools and institutions have publicly said they are in favor of it. That way I do not single out any school for criticism, especially because I don't know every single school.
I was able to find these and the statements of other schools that support VAISEF. If you need help looking for information, let me know I and I will see what I can do. VAISEF's (and member organizations') position is this:
"671-650-A-1-2-Restraint and seclusion are written as
prohibitions with the exception of emergency situations. However, they
are allowed in emergency situations under 671-660-D.We recommend
removing them from the list of prohibited actions because they are
allowed both under the prohibited actions and elsewhere in the
regulations. Further, for some programs, other licensing agencies allow
prone restraint. We recommend the language “unless program is also
licensed by another agency that allows prone restraint” to the
regulation.Finally, some of the commercial training programs for
restraint include techniques for how to properly conduct a prone
restraint. Staff certified in the necessary training to perform a prone
restraint without compromising the safety of the student. The use of restraints, seclusion and aversions will be addressed in proposed Regulations Governing the Operation of Private Schools for Students with Disabilities.
The proposed regulations –
Would **allow the “application of aversive stimuli” such as introduction of foul or burning substances, deprivation of senses, and excessively loud sounds;
Would **allow restraints that impede breathing (prone restraint); Lacks clarity about when restraint and seclusion could be used which could result in their use in situations other than when there is imminent danger of physical injury and when less restrictive measures have failed or would be ineffective; and
Would **allow the use of restraint and seclusion for “severe property damage that may result in personal injury.” The Virginia State Board of Education is planning to take final action on the proposed regulations during their May 23 meeting. The Board needs to hear from you now about these proposed regulations. The Virginia Coalition for Students with Disabilities is asking that Board action on the regulations be delayed until amendments to better serve and protect students are incorporated into the proposed regulations. Please email the State Board of Education at BOE@doe.virginia.gov The Board needs to know that they should not delete current regulatory requirements that protect students from harmful restraints, seclusion and aversive interventions. The Board also needs to know that you believe that action should be delayed for comment.
The Virginia Coalition for Students with Disabilities is drafting comment on the proposed regulation which will be available early next week. For more information, contact the Coalition at email@example.com or 757-351-1585 or 866-323-1088. -
My notes after reading the proposed changes:
following organizations came out in support of removing prohibitions
against prone restraints, restraints, seclusion, and aversives. YOU
MIGHT WANT TO THINK ABOUT IT BEFORE SENDING YOUR CHILDREN TO THESE
(These are all from page 81 of the pdf):
Virginia Association of Independent Specialized Education Facilities (VAISEF) "Recommended removing
And, actually, I am going to stop copying schools because there are so many. All the schools in the Rivermont organization support it, and numerous individual staff members also support it.Kellar School, Phillips Programs, Virginia Council for Private Education, The Discovery School.
Disappointingly, the organization that goes around giving presentations about how they don't use restraints and aversives, the Grafton Integrated Health Network, fully supports the VAISEF position. :( I can say that makes me sad, because Grafton seemed to be walking the walk. Oh well.
So, instead of requesting that regulations, for example, be strengthened and clarified, they are requested to be removed. If a program is licensed by an agency that allows prone restraint, then the requested change here is to have regulations fit that licensing agency that allows prone restraint, rather than limiting the licensing agency.
A screen capture of the changes, with former prohibitions clearly stricken from the law, can be seen here. Sometimes pictures have more impact, so, this:
Over at the Autism Acceptance Day blog, and as a starter for International Autism Acceptance Decade, 2010-2020, we have launched a series of interviews with Autistic people. The first one, with Lei Wiley-Mydske, is live!
Many of the posts will be with "not-so-famous Autistics," (and some might even be with Autistics who choose to remain anonymous). The reason for this is that, in the conversation about autism, which is always the conversation about Autistics, some Autistics are more prominent than others and some don't get as much of a chance to make public statements. Here is a place where that can start to happen. I won't refuse to interview "famous Autistics," but I am giving priority to people who are not as well-known. As for doing interviews with people who want to use aliases or remain incognito, some Autistics have important things to say but are not able to take the risk (to employment, health care access, etc.) to "come out" as Autistic. I respect that choice. As we post more interviews, I will update the list here. Do go over to the Autism Acceptance Day blog (which includes Autism Acceptance Month/Year/Decade/and Beyond!) and read the posts, articles, reprints, poetry, and view the photos and images. Interview with Lei Wiley-Mydske- Autism Acceptance
Lately, my son has been trying to articulate something he has been thinking about autism. What he has said, on various occasions,
is "Why can't autism just be a thing? Like, birds are a thing. Blue
eyes are a thing. Why can't autism just be a thing? Like.... yeah, you
need supports, so you get supports, and then, it's just a thing.... it's not 'Oh no! Autism! Everyone get upset!!!' It's just a thing like everything else!"
Do you know what he means? I know exactly what he means, but I am a bit hesitant to 1. "speak for him" in a way that interprets him to you. That is not what people need to have happen to their words and ideas, and 2. I will turn off comments, because frequently when I post (or say) something he has said or done, people react as though he should be responding as though he were 40, not 10. Just because he's the kid of a semi-famous Autistic does not mean he should be expected to use adult rhetoric and have adult "understandings" (and numerous philosophers and writers have remarked on how kids understand things better than adults sometimes!)
I think he might be a little sick of April, too. Although lately I have not talked very much to him about autism, he knows I am very busy with Autism Acceptance Stuff. He is aware that acceptance is needed, and has been aware of that for years, and he is aware that many of us work hard trying to counter negative images of something that is just a thing- autism. It really is just a thing. One thing among many other things in life.
When I asked him a bit more about his idea, he said it doesn't mean to ignore autism. He doesn't mean that people should not have supports. He is very clear that it means that some people are making too much of a big deal about autism. (I think he is clear that if people wouldn't make such a big deal about autism, his mom might get off Facebook. :) )
"Autism. It's just a thing." He has Autistic friends. To him, they are just his friends. Yeah, they need supports. So.... they get supports, and... they are just kids. Nothing special. Just.... kids. To him, kids are kids. He is friends with a number of Autistic kids, and they are just friends. It's not about "Let me provide this poor kid with some supports," it's about "Let's play!"
Here's a post about friendship that just came out this morning, and, although it is about friendships between adults and children, and adults and adults, it fills in some of what I mean, in a kind of tangential way.
This is a kid who has been both aware of, and accepting of, autism, since he was four years old. That's when I first started talking about autism with him and when he started meeting other Autistic people, both adults and children. So, to him, autism is just one of the many things in his world. It's not something "new" that he has to learn about, even though as he grows older, his understandings will probably change a bit.
Adults might not think he is providing enough "support." Adults might think he doesn't (at age ten) "get it" the way they do. That he doesn't "understand" autism. He understands autism, and humanity, pretty well, better than some adults, IMO. Playing is a type of support. Well, he's a kid. Let the adults do theirthing, and let kids be kids.
There's also this:
Child Finds Answer to Autism Puzzle NOTE: My child has given me permission to post this. We are part of a growing trend of bloggers who ask permission or talk to our child about anything we post about them rather than assuming that we can say anything we want about our kids. Some of our kids can't give a clear answer but we can talk with them anyway. Respect your blog information sources, especially children.
Yes, indeed, all those blue lights cost money. How much money, I am not sure. Let's just say they are using compact fluorescents, which are said to be cost effective and efficient, and also give many Autistic people rather severe processing difficulties when we are in their presence. Those would not be TOO expensive, unless you are lighting up an entire bridge, the whole Sydney Opera House, or So, here's a photo essay of where your hard-earned dollars, that you have donated to Autism Speaks and other organizations who are on the Blue Bandwagon, go:
Think about it. How does buying a bunch of blue lightbulbs, making expensive blue signs with PICTURES of blue lightbulbs, help Autistic people or our families and friends and communities? Bystander: "Um-why is that entire bridge blue?" Autism Awareness Person: "It's lit up blue for Autism Awareness!" Bystander: "Oh. Cool." Autism Awareness Person: "Do you want to make a donation?" Bystander: "Uh--sure. Here's a few bucks."
That won't even pay for the lightbulb display.
Hey, I know! Instead of supporting Light Up Your Money!, er, I mean Light-It-Up-Blue campaigns, how about donating some money to a local autism group, where money stays in the community and goes for much-needed supports and services, programming for families and Autistic kids, teens, and adults. Or donate to organizations like the Autistic Self Advocacy Network, who work actively to promote meaningful changes in autism policy at the national level. It's just an idea....
According to one source, "The Empire State Building in New York City will be holding a special
lighting this evening where the top of the building will illuminate
blue. In 2012, over 300 iconic landmarks around the world, such as the
Sydney Opera House and Niagara Falls, participated by turning their
lights blue. This year, over 7000 are slated to participate." Yes, people, that's 7000 landmarks, using way more than couple of lightbulbs each. At the Sydney Opera House, 15,500 light bulbs are changed annually. That's BEFORE all the blue ones.
Apparently if you are developmentally disabled, you can't feel anything. At least that seeme to be what Fletcher Allen Heath Care assumes. They performed an ostomy on a patient today using light anesthesia that the patient had told them does not work for her. I will copy one paragraph from this post by someone who is an advocate for her and then you can read the rest. "Of course the pain exists because they ignored her directions regarding
anesthesia and relied on light sedation + lidocaine. Had they bothered
to tell her what they were really going to do (or followed the
directions she gave them), she would have informed them that she doesn’t
respond very well to lidocaine. The hospital, in essence, performed an ostomy without anesthesia, and now wants to dump the aftermath of their malpractice onto a nursing home." http://webmuskie.tumblr.com/post/47036621965/they-want-to-discharge-her Please keep pressure on Fletcher Allen "Health Care" by calling, writing to them, and commenting on their Facebook page. Contact information is below.
"“Are you at peace with your decision?” Is a question I would expect to
be asked repeatedly if I’d chosen to avoid treatment and go home and
wait to get the infection that would kill me. Not a question that goes
with choosing life. He asked me at least three times in a row."
When April comes around, I try to write a
new blog post about Autism Acceptance. I have been doing this for three years.
I try to counter the kinds of "awareness" campaigns that treat
Autistics and other people with disabilities as burdens, deficits, or, and -this
just came into my inbox an hour ago- "missing pieces."
Today, however, Acceptance of Autism, or
the lack of it, is a bit more personal. Someone I admire very much is in
a hospital in Vermont, being denied a medical procedure that could save her
life because she is disabled.
I am talking about Amanda Baggs.* Amanda has a condition known as gastroparesis. One of the
things it causes is aspiration, which often leads (and has in Amanda's case) to
pneumonia. When she first tried to enter the hospital, she was refused
admission. In addition, hospital personnel repeatedly suggested that she should
not have a feeding tube inserted, even though that is the one procedure that
medical personnel agree could save her life. You can read about Amanda’s
experiences here: The
weirdness of being told that the death alternative is the one I should
I called the hospital. I wrote on the
hospital Facebook site. I filled out a form on this hospital website. "Are
you still trying to talk Amanda Baggs into death by pneumonia? I sincerely hope
not. She has personally helped me with a number of difficulties in my own life,
with her insight, thoughtfulness, and honesty. I am grieving at the thought of
an untimely death for her simply because your hospital does not value her life
as a human being."
The hospital has been writing the usual
banal reassurances to the many people who are rallying in support of Amanda on
the Fletcher Heath Care Facebook page, about how they are "working with
this patient to determine the best plan of care."
To think of
Amanda being "allowed" to die is not really bearable to me, on a
really “selfish,” “personal” level. Selfish and personal is how we get about
lives we care about, whether of family members, friends, even people we don’t
know well whose writings have helped us, or about ourselves as disabled
people and our own wishes for our lives.
does a disabled person's very real wish to go on living amount to
"selfishness" and "burden on society" whereas a nondisabled
person's very real wish to live is considered healthy, proactive, and positive?
is something particularly disturbing when the word "allowed" is
coupled with the verb "to die" when it's a person with a disability
who is being actively pressured to forgo procedures that have already been
determined to potentially be of benefit.
Here is the personal part.Lately,
I don’t like writing very personal things about myself, but someone is in
danger, so screw that.
Yes, Amanda has helped me- directly if one considers that reading something that
makes a sudden change possible is direct, or indirectly, if you
think that you have to be in the room with a person to be directly affected by
them- with something that is one of the most important aspects of my life. Like
one of the top three most important things, after life itself, of course.
Music and musicianship. I have found many of Amanda’s writings and videos
helpful, but the one that made a significant and even observable-by-others
impact on me was her post on "efficiency and frugality," which
changed the way I play the organ so dramatically that I could actually
demonstrate it to others and they could see and hear the difference.
Here is part of what I wrote to the
hospital, trying a personal, human, humane approach. I know that others will do
the task of warning the hospital that they will call 911 and alert the local
media, so I went for the WHY THIS PERSON I DON’T KNOW
VERY WELL MATTERS A LOT TO ME approach.
"Please do not try to coerce your
patient Amanda Baggs into accepting inaction on your part. Please do not refuse
to give her the care she needs, specifically the feeding tube which would allow
her to stop having the aspiration problem. Death by pneumonia is NOT really
what is called for here. Obviously, Amanda has a disability. This does not mean
she should be denied care. If you have staff or doctors who do not see the
value in the life of a disabled person, let me assure you that she has made my
life, personally, much richer, because of her writings about autism. She helped
me figure out something about motor skills that none of my nondisabled,
professional, PhD-holding professors could do in regards to my musical skills (**).
Thanks to Amanda, I have held a position as organist and choirmaster for the
past 6 years. Do not allow her to die because you have
some stereotype that she is a "burden." To the contrary, she is an
*asset,* both in my life and in the lives of countless people on the autism
spectrum and their family members who have benefited by her work. Thank you."
I apologize for the less-than-polished
quality of this blog post. I got home at 2 am after having a nice day with my
family. I planned to write a guest blog post I promised to do, on Autism
Acceptance Month. I ended up doing this instead. Please help Amanda by calling
or writing to the hospital.
Links to current updates and hospital
contact information can be found in my previous blog post here:
*Amanda Baggs is a well-known Autistic
disability rights activist, videographer, blogger, writer, whose works can be
found on YouTube and at her blog
I am not dissing my nondisabled, professional, PhD-holding music professors! :)
They simply did not know some of the issues I was facing with motor skills. I
did not have any sort of diagnosis at the time, and it took me until I was in
my 40s and read Amanda’s post to figure out that I was doing things that caused
a great deal of muscle tension, that “regular” music majors would not have, and
that it would take a particularly Autistic way (or my own Autistic way,
prompted by what Amanda wrote) to remedy that.