Monday, June 6, 2016

Ten Years of Disability Rights Activism: 06/06/06 to 06/06/16 and Beyond

Stick around. This will be good when I get it done!

And.... I have simply not had the time to write my retrospective, and now, this:

http://autisticadvocacy.org/2016/07/a-message-from-asan-president-ari-neeman/ 

"At the beginning of 2017, in five months time, I will be passing the Presidency of ASAN on to Julia Bascom, the organization’s current Deputy Executive Director and leaving the ASAN staff to contribute to the disability rights movement in new ways. Since joining the organization in 2012, Julia has played a critical role in building ASAN’s leadership programs along with other important aspects of our advocacy work and community programming. She already plays a central role within ASAN’s ongoing work, and I am very confident that the organization will grow and prosper in new and interesting ways under her leadership."

"This innovation is not the property of any single person or organization. It doesn’t belong to the most famous or the loudest among us. It is the birthright of every Autistic person, an invitation to those of us who are quietest and most alone to become a part of something larger..."

Sunday, October 25, 2015

Sensory Friendly Concert (TM) Photos

Schantz pipe organ at St. Martin's-in-the-Field Episcopal Church, Severna Park, MD, where I gave a Sensory Friendly Concert (TM) on October 24, 2015

Paula C. Durbin-Westby, organist, and the Schantz pipe organ

A view of the organ from the handbell loft

A view of the organ console from above.
My organ shoes, with sparkly rainbowy rhinestones!

Sparkly organ shoes!

I will post more pictures as soon as I get them!

Sensory Friendly Concert Facebook Event

http://www.themusicalautist.org/our-next-sensory-friendly-concert-featuring-paula-durbin-westby/ 

My Sensory Friendly Concert Facebook Note a couple of weeks before the event

http://www.themusicalautist.org/paula/

Sunday, October 4, 2015

Sensory Friendly Concert ® and The Musical Autist

I am giving an organ concert on October 24, 2015. Read CJ Shiloh's post about the concert here: Our next Sensory Friendly Concert – Featuring Paula Durbin-Westby! The concert will take place at St. Martin's-in-the-Field Episcopal Church in Severna Park, Maryland, at 6:30 pm. The address is 375 Benfield Road, Severna Park, MD 21146.

Image of me sitting at an organ (different than the one I will play in Maryland), wearing a light blue tie-dyed top and black pants, and looking happy, because ORGANS! The words are "Musical Autist brings you a Sensory Friendly Concert (TM). The date and location and the name of my organ assistant are included. A link to www.TheMusicalAutist, and proudly sponsored by: Minuteman Press, Annapolis Music Therapy, and Creating Communities: Harnessing the Power of the Arts.


This concert is a bit different than the average organ recital. It is a Sensory Friendly Concert ® , presented by TheMusicalAutist:

"We advocate for EQUAL RIGHTS TO THE FINE ARTS. We promote Neurodiversity and Self-Advocacy through Community Music Therapy. We are a nonprofit organization developing Sensory Friendly Concerts, for the purpose of cultivating a vibrant autistic culture and to advance the Autism Rights Movement."

This Sensory Friendly Concert ® is sponsored by Annapolis Music Therapy and Creating Communities.

I am still in the process of creating the concert. Current plans are to proceed from softer to louder so that attendees who are very sensitive to sounds can adjust for different parts of the concert. Stimming, hand flapping, dancing, leaving to take a sensory break? Those are all OK at Sensory Friendly Concerts®!

I will also be talking about about music and disabilities, including developmental disabilities. I will be talking about sensory processing differences and disabilities, and about movement and music and disabilities.

This is an exciting opportunity and I know a lot of people are planning to attend. I hope to talk to people a bit more after the concert (as I don't hang out before concerts since I need to save my energy!)

I am proud to be associated with The Musical Autist. CJ Shiloh, MT-BC has written a Huffington Post article about The Musical Autist and Sensory Friendly Concerts ® Autism and Public Performances: How Do We Do This? From the article: "Typical public concert venues are inaccessible to those who are unable to sit still and be quiet. Experiencing live music in the fine arts is totally elusive to the growing number of people in our society on the autism spectrum. This is not okay. This is why I got started with the concept of Sensory Friendly Concerts ®, and why it's been developing into a model of 'community music therapy'."

My interview for The Musical Autist is here: http://www.themusicalautist.org/paula/

I would write more, but I need to go practice the organ! I will post some updates closer to the concert date.


The organ at St. Martin's-in-the-Field Episcopal Church in Severna Park, MD. It has 26 ranks of pipes, all of which I am looking forward to playing!
A stack of flyers for the concert! The photo is the same one of me below by Katie Miller. The Musical Autist logo is in the upper left-hand corner. Text says "The Musical Autist brings you a Sensory Friendly Concert (TM). Saturday October 24, 2015, 6:30 pm. St. Martin's-in-the-Field. Benfield Road, Severna Park, MD 21146. Featuring Paula . Durbin-Westby. Organist, Choir Director, Music Instructor. Founder of International Autism Acceptance Day, Month, and Year, 2010-2020. [the name of my organ assistant is listed]. For more info visit: www.TheMusicalAutist.org. Proudly sponsored by Minuteman Press, Annapolis Music Therapy, Creating Communties [the logos of these three businesses are shown].

Another view of the St. Martins-in-the-Field organ.

A photo of me at a different organ, taken by artist Katie Miller


Note: "Sensory Friendly Concerts® are trademarked so that only Board Certified Music Therapists (or WFMT equivalence) can facilitate these events." When I was first invited to do this SFC, I did a search on "Sensory Friendly Concerts" and found an instance of intellectual property violation. I am not going to sidetrack my post here and I will let you guess the name of the offending organization. You probably knew who it was before you finished reading the sentence! Of course, Autism $peaks. Of interest might be the fact that CJ Shiloh, the creator of and trademark holder for Sensory Friendly Concerts® first met me at an anti-Autism $peaks protest I organized on behalf of the Autistic Self Advocacy Network in 2010 in Washington DC.

Wednesday, April 1, 2015

#AutismAcceptanceDay5 - 5th Annual Autism Acceptance Day

#AutismAcceptanceDay5 International Autism Acceptance Decade 2010-2020. Moving Beyond Awareness.Original blue version



#AutismAcceptanceDay5 International Autism Acceptance Decade 2010-2020. Moving Beyond Awareness. Red version
Celebrate Autism Acceptance Day and Month for the fifth year!

2015 also marks the half-way point in International Autism Acceptance Decade, from 2010-2020

The original blog is here. Interviews with Autistic people are still being accepted. We have been doing interviews with Autistics for three years now. The interviews highlight Autistic experience and  acceptance of Autistics. 

http://autismacceptanceday.blogspot.com/

A number of new initiatives this year are:

#WalkInRed at

http://walkinred.weebly.com/

https://www.facebook.com/events/441004906049419/ 



Please do searches on Autism Acceptance, Autism Acceptance Day, Autism Acceptance Month, Walk In Red. I have scheduling conflicts that do not permit me to search and put everything here right now. Please put links to ACCEPTANCE in the comments section and I will post them.

Other important links:

http://www.autismacceptancemonth.com/about/

http://blogs.plos.org/neurotribes/2012/04/02/autism-awareness-is-not-enough-heres-how-to-change-the-world/

Friday, February 13, 2015

Who Killed Alex Spourdalakis?

Movie Review: Who Killed Alex Spourdalakis?

Note: I am too exhausted by this topic to add more text. Please read the links and pass it on. I made the first two images. I will provide a translation for the second one when I can do so. It is another image originally made by the "documentary" makers that I have altered for the sake of correct information- that Alex Spourdalakis was murdered by D. Spourdalakis.

Sensitivity warning for image of murder knife (made by the "documentary folks at Autism Media Channel). Image is of a DVD cover, and is a knife (which points down toward the name of Alex Spourdalakis because these people really are violently inclined). The text above says "Ignorance, Negligence, Indifference: Autism and the US Healthcare System." Below that is the title "Who Killed Alex Spourdalakis" and then "A documentary by the Autism Media Channel." I have altered it a bit. I added text that says "Alex Spourdalakis was murdered by his ex-mother, and by the fanatic conspiracy-mongering anti-vax hype that led her down the slippery slope of disrespect and violence." Down where it used to say "A documentary.." it now says "A conspiracy theory by the Autism Media Channel."










Image of a single candle. Text: "He was 14 years old. His name was Alex Spourdalakis. (larger text): His name was Alex Spourdalakis. (larger text): His name was Alex Spourdalakis. And he deserved to live. Autism is never a reason to murder. By MamaBeGood.blogspot.com



Autistic Community Vigil in Memory of Alex Spourdalakis 

Alex Spourdalakis Murder-ASAN Calls for Federal Hate Crime Prosecution

CBS Provides Glimpse into "Documentary" Defending Autistic Teen Alex Spourdalakis' Killers





Wednesday, November 5, 2014

Murder of London McCabe, Age Six

It is with a heavy heart and much anger that I report yet another murder of one of our people. Six-year old London McCabe was murdered at the hands of a relative. I have stopped calling these murderers by any sort of parental or familial name. When you murder your child or family member, you stop being a family member. When you murder someone under your care who is dependent on you, you don't get to be called "caregiver" any more. One of our people refers to belonging MORE to the Autistic and disabled community than to a murderous family member. This does NOT dismiss those family or community members who would never have wanted the murder and would have done anything in their power to stop it. It does mean that the murdered person ALSO belonged to the community of disabled people, even if that person was not aware of our (non-monolithic, by the way) community.

News media, including NBC, has the usual "both sides" stories. As though there was a legitimate "other side" consisting of people who would murder their children or are planning to, and that "we" should give "equal time" to those people. They certainly should have enough airtime to be exposed as people who need to be monitored closely, but they don't need their views to be "equal." When someone is murdered because of their race, ethnicity, or sexual orientation, do we give "equal time" to racist supremacists, anti-gay fanatics, or other "justifiers?" No, we do not. At least not in supposedly professional "mainstream media." (Bloggers can, of course, write what they want, and those who support and justify murders need to be watched closely for signs that they are about to commit crimes.)

"Expert" Dee Shepherd-Look was dug up from somewhere by NBC and has this nugget of "truth" (because she's an expert....) "These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated." Really? Because PARENTING IS NEVER RECIPROCAL. Newborns don't reciprocate. They cry and need their diapers changed and eat every twenty minutes. Not exactly reciprocal love. SIX-YEAR-OLDS, which London was, whine and beg for candy at the store, even when you are exhausted from whatever else has gone on in your day. They might say "I love you" or not. Their needs come first, especially THEIR NEED FOR SAFETY AND PROTECTION AT AGE SIX. Teens- reciprocating? Sure, but not all the time. Sometimes they are TOO clingy, which is NOT reciprocal. Most teens are not all about "Did I reciprocate enough with my parent?" London will never get to BE a teen. People in their twenties and thirties? They are living their own lives. For a parent who has a grip on what raising a child means throughout the lifespan (a lifespan that London McCabe will never get to experience), the GOAL is to have the person NOT reciprocating all the time. Or even any of the time in some cases. PARENTING IS NOT RECIPROCAL AT ANY AGE. This is not earth-shattering news. Sure parents feel hurt, rejected, even despised at times, depending on the age of the child, the situation, the context, the need for distance.

A number of blog posts have been written in the wake of Shepherd-Look's questionable portrayal of Autistics: A Defense Against Libel

I am DONE with excuses for murder, asking me to "walk in the shoes" of some "mom" who has killed her kid. But before I was finally and completely done with thinking about walking in the shoes of a murderer....

I tried imagining the murderer in the case of London McCabe, because I thought "Gosh, I should actually try this instead of always countering it like I did with Alex Spoudalakis (age 14, brutally murdered including almost hacking off his hand) or Issy Stapleton (attempted murder by charcola burner in car, which she survived). So, I imagined being in the room with the person who murdered London McCabe, and..... I am a very visual thinker, so can easily imagine being right there. And.... what I felt most was that I wanted to punch her. I did not feel this about the other murderers, because I did not try. And won't. I don't want to feel that aggressive about anyone. I can't murder anyone, I can't even feel comfortable wanting to punch a murderer. So sorry, people who want me to "walk in their shoes." I then tried imagining being her and holding a child, even MY child, over the edge. I could also NOT DO THIS because EVERY CELL IN MY BODY would be trying to SAVE MY CHILD not KILL him. This made me feel very frightened and disoriented and wanting to cry and scream. I could not because my child is in the other room and he would want to know what is going on. I did not get as far as imagining letting go of the small hand (Or whatever body part) that would allow my child to plummet to an icy death below. Recently I lost health care access and so access to anxiety medications, but I managed to save a few for difficult times. After doing this thought experiment, and having to go out and conduct a rehearsal tonight, it might be one of those times, as I am still shaky.

I COULD, however, imagine dangling from a bridge and how it would feel to hit water 130 feet below (like hitting concrete) and then drowning slowly. What that made me feel was: frightened, sort of like I could not breathe, cold, and shaking. There. Now those who want to suggest walking in someone else's shoes? Be sure you take that walk yourself- imagine yourself hitting water after accelerating at 32 feet per second per second for 130 feet.

So much for asking me to imagine being a murderer. I will NOT ever try this again, but will go back to JUDGING murderers (but not hating them, actually. Hate is another matter altogether, and hate and negative judgment are not always linked) and countering people who make excuses for the murders or people with disabilities.


London McCabe, age 6, murdered by dropping him off a 130-foot bridge into icy water. Yet, "expert" Dee Shepherd-Look whines about "the moms" [sic] and how they don't get "reciprocal" love. Guess what. PARENTING IS NOT ALWAYS RECIPROCAL FOR ANYONE, MS. "EXPERT."

http://autisticadvocacy.org/2014/11/statement-on-the-murder-of-london-mccabe/

http://geekysciencemom.tumblr.com/post/101852838442/i-have-no-words

London McCabe was a wanted child

Comments on the murder of London McCabe by Zoe Gross

http://loveexplosions.net/2014/11/05/ability-to-love-presume-competence/


Have someone you are afraid might be plotting to kill you? Have concerns about yourself maybe hurting or killing someone? Some resources are here. Not an exhaustive list but might help prevent the worst kind of harm. http://tool-kit-autistic-alternative.blogspot.com/

*Included in being "DONE with excuses for murder, asking me to "walk in the shoes" of some "mom" who has killed her kid," as I said above, I will not be posting comments that then ask me to make excuses for murder for one reason or another, including "I don't approve of what she did, but....". I just won't.

Many people notice the stark difference between the media and "comment section" treatment of murdered Autistics and people with disabilities, and murders where the neurology of the child is "typical" (or presumed to be). An excellent post about this topic is here, comparing the murder of London McCabe and that of Scott McMillan, reported two days later. NOTE: The blog post links to some graphic descriptions. A Tale of Two Murders

Image of London McCabe wearing a hat. Text says "Belssed Be, London McCabe. 2008-2014. NO MORE AUTISM FILICDE

Image of London McCabe holding toy helicopter. Text is #JusticeForLondon


Tuesday, September 30, 2014

Copycat Murders a Concern for Autistics, Most Parents



AMC Theatres is now showing "Who Killed Alex Spourdalakis." The date I notice is October 16 in Dallas at AMC NorthPark 8687 Central Expy 300 Dallas Texas 75225. Does anyone want to organize a protest at the showing? I am not in Dallas or I would be out there with some literature to hand out. This showing does no good, except it makes money for AMC and allows people who want to sidestep the fact that a murder was premeditate and committed to have a very public, national venue in which to (even if unintended) put the idea into people's minds that so-called "mercy-killings" and "angel in heaven" stuff is not as bad as heinous. 

Note: The original press release for this "documentary" was September 1, 2913. K. Stapleton attempted to murder Issy Stapleton on September 3, 2013, two days after the press release. 

Sept. 1, 2013 Press Release of "Who Killed Alex Spourdalakis?"

September 3, 2013 news reporting attempted murder of Issy Stapleton

Do you think this is just coincidence? It might be, of course. Then again, it might not. I am very concerned for my people, and all people with disabilities.


Contact AMC here: https://www.amctheatres.com/contact/feedback

I wrote this to AMC THeatres: I am writing to express my concern about the film called "Who Killed Alex Spourdalakis?" to be shown at Dallas AMC NorthPark 15 on October 16. The video is a thinly-disguised attempt to justify the murder of Alex Spourdalakis by his mother, which included multiple stabbings and  almost severing his hand. seem to be trying to influence the outcome of a murder trial. Since there seem to be some copycat murder attempts shortly after murders of a person with a disability get a lot of media attention, showing this film, which blames the disability and focuses away from the premeditated murder, may be dangerous for those of us with disabilities.  Please reconsider showing this ”documentary.”  







The pre-release of the film was posted on numerous websites that announce upcoming films. Two days later, K. Stapleton attempted to murder Issy Stapleton. With each fresh murder or murder attempt, a bevy of what are sometimes called "supporters" join forces to try to make us "understand" and feel "compassion" for the murderer, not the victim. Some of these people are concerned for themselves, about murdering their own children or people under their care. While attention is needed to the very serious issue of murders of people with disabilities, showing a film that derails the conversation by blaming vaccines, autism, "lack of services" and everything other than the murderer is DANGEROUS for people with disabilities. I have not seen one person write in comment sections on various articles or sites* "Wow, after watching this film, I realized that there is no way I would ever kill my child. I was concerned about myself initially, but now I stand with those who condemn murder." That would be something. That is not what is happening, though.


* (including the Dr. Phil show, which had as one of its effects an attempt to suggest that K. Stapleton not serve time for attempted murder) NOT ONE that I notice

The "Who Killed Alex Spourdalakis (Answer: His Mother)" film is not a documentary offering a "glimpse" into autism or into the workings of the mind of murderers. Instead, the film suggests that "lack of services" leads to the murders of people with disabilities. In news reports after the murder, it appears that the murderers actually turned down services that were offered. The article and the forthcoming video (if it is ever completed) attempt to justify the heinous murder of Alex Spourdalakis, which included multiple stabbings and  almost severing his hand. In fact, the filmmakers, perhaps in collaboration with CBS, seem to be trying to influence the outcome of a murder trial. This "excuse" for murder would never be tolerated in any other circumstance, even difficult circumstances such as poverty. It is not tolerated now, by our community, that of Autistic people, our parents, families, friends, and communities. 

From my previous post on this topic: 

Typically, conspiracy theories, including films, appear after a verdict has been given or when some information is missing, or a person is missing. In this case, CBS and the filmmaker engage in conspiracy tactics before the outcome of the case, and with full information about how the murder was done (pills and knife), where, and how long it might have taken for Alex to die after having been repeatedly stabbed and his hand almost hacked off. There is no "whodunnit" here.



Commentary on the "documentary" by Autistic advocates and parents of Autistic children: 

It is Now OK to Kill Your Child

Whitewashing the Brutal Murder of Alex Spourdalakis

CBS Provides Glimpse into "Documentary" Defending Autistic Teen Alex Spourdalakis' Killers 

Sharyl Attkisson and CBS News: Lying by omission about the murder of autistic teen Alex Spourdalakis


Alex Spourdalakis running, when he was alive
Issy Stapleton