Sandy Kinnamon: her life mattered

Content Notes:  emotional abuse, death

My friend Sandy Kinnamon was found dead in her car on Thursday, July 28th.  She, reportedly, disappeared on Sunday, July 24th.

I don’t believe in misrepresenting how a person lived her life to deify her in death.  Like every human, Sandy was flawed, struggled, and made mistakes.  More importantly, she was so very good.  Sandy and I became close friends several years ago through our social justice activism.  She was a loving mother and fiercely devoted to her children.  Sandy was a friend to many.  She could always be counted on to defend the underdog.  She was always on the side of right and fair.  As a friend, she was loyal, unfailingly kind, generous to a fault, and forgiving.  Sandy was feisty and funny.  No one could make me roar with laughter more than Sandy.

To say that I am profoundly sad, angry, and confused over her death is an understatement.  But I’ve chosen to process my grief privately.  The loss that I feel is not small but pales in comparison to that of her children, her family, and society in general.  Not without reservation, I’ve made the decision to use my public space to share my concerns about the circumstances surrounding her death.  I’m going to do my best to respect Sandy’s confidence and respect the privacy of her children and family at the same time as I ask that her death be given more than a perfunctory investigation.

I hadn’t spoken to Sandy, privately, in months until the Wednesday and Thursday prior to her disappearance.  Not because we’d had a falling out.  I’d been ill and mostly off the grid.  She reached out to me via Facebook Instant Messenger.  At this point, I’m not going to share the exact content of our communications publicly; although, I have shared with the Allen, TX police.  In short, Sandy was at loose ends and wanted to talk via telephone about the difficulties she was having in her marriage.  Not for the first time, Sandy mentioned being the victim of emotional abuse.  It is worth noting that I am not the only friend with whom Sandy shared these experiences.  On Thursday, we decided that she would call me Sunday.

I didn’t hear from Sandy Sunday.  This wasn’t particularly unusual–both Sandy and I had a history of missing chat dates.  I didn’t think anything of it.  Not until I received the following text from her husband on Wednesday morning.

image

Obviously, my concern for her well-being  was immediate.  With the context of Sandy’s body being discovered in her car, this text is alarming.  I’d never spoken to her husband prior to receiving this text.  Because of the nature of what Sandy had shared with me about their relationship over the years, I didn’t feel comfortable being completely forthcoming with him.  I logged onto facebook instant messenger to find a message from a member of her immediate family asking if I knew anything about Sandy’s whereabouts.  I shared, with that person, my most recent communication with Sandy.  Her family member did not seem to share my concerns about Sandy’s husband but did provide me with the email address of the investigator handling Sandy’s case.  I promptly sent my most recent correspondence with Sandy to the investigator and have yet to receive so much as an acknowledgement of its receipt.  Similarly, others have reportedly shared concerns supported by verifiable and written documentation with the Allen Police without response.

Several of Sandy’s close friends launched a Facebook page to get the word out about Sandy’s disappearance.  Jason left several public comments on the page which were disturbing in that they disparaged Sandy, seemed to be of a hostile nature rather than one of concern, and were later discovered to be inconsistent with the facts surrounding her case.  Jason later deleted his comments; although, those running the page were able to capture screenshots which have been provided to the Allen Police.  At this point, I don’t feel comfortable publicly sharing those screenshots.  However, I will share a couple of apparent inconsistencies.

  1. Jason made the following comments on the “Save our Sandy” Facebook page immediately prior to a journalist sharing a press release confirming Sandy’s status as a missing person and requesting that anyone with information about Sandy communicate it to the police.image
  2. Jason claimed to have made a Facebook post about Sandy being missing.  However, it was not visible on his page, nor was such status visible on Sandy’s page.  Jason did state on the “Save our Sandy” page that the police had discouraged the family from making facebook posts but that they, eventually, decided to do so.

Sandy’s body was found on Thursday afternoon, in her vehicle,  behind Allen Community theater by Jason and Sandy’s sister who flew in from out of town.  It was reported in a news article that this location is about 100 yards from her home.  100 yards.  That begs the question: How is it possible for a person to be found 100 yards from home after being missing for 5 days?  100 yards can be easily be covered by one person, on foot, within an hour or two at most.  Jason said he’d been looking for days.

I’m struggling to imagine a scenario where the police took Sandy’s disappearance seriously, made any effort to search for her, AND failed to find her 100 yards from home.

I am, certainly, not privy to the details of the investigation of Sandy’s death.  But I do know that I have not been contacted regarding the information that I shared.  My friends, who also contacted the police have allegedly not been contacted.  The media reports that there were no signs of “physical trauma” and that “foul play is not suspected.”  If Sandy’s death could be immediately attributed to natural causes, I have to believe that this would have been reported to the public to prevent unfounded speculation.

Why was there no media coverage about her disappearance until Thursday, shortly before her body was found?  Why were there no apparent organized efforts to locate Sandy?  Why does it seem like the police aren’t actively investigating Sandy’s death?

Sandy’s life mattered.  There is enough information readily available to the police to treat it as suspicious (assuming it cannot be attributed to natural causes) and conduct an investigation accordingly.

Sandy’s life mattered.  The police have an obligation to investigate her death.

Sandy’s life mattered.  The public has a moral obligation to hold the police accountable.

Sandy’s life mattered.  Why wasn’t her disappearance treated like it does?  Why does it appear that her death is not being treated like it did?

Editing to add a comment that Sandy’s sister just posted:  “Hello everyone. This has been an extremely difficult time for all of us and we appreciate your support. I am one of Sandy’s sisters and I’m writing to let you all know that we, Sandy’s family, have been in close contact with the Allen Police Department since the beginning. The investigation is ongoing and all the tips and information you have given to the Allen Police Department is being examined and investigated. If you all have further information to share please email Brandon White at bwhite@cityofallen.org. If you wish to be anonymous please text keyword: ALLENPD and your tip to 847411. We assure you APD is doing a thorough investigation and this takes time. Again, thank you all for your support.”

 

 

 

almost like us

This morning I was reading the Valentine’s messages given to Evelyn by her classmates.  Because of the similarities in the messages (and that they are on pre-printed paper), I’m assuming that the students were instructed to write a thoughtful message.  I imagine that they were asked to think of something special about each classmate.  Most of the messages were wonderful and I found myself smiling.

image

Image is a piece of pink paper with preprinted lines. There is text written in pencil written by a child which reads: “To Evie you are really good with your ipad And you are almost just like us.” The text is followed by a heart and smiley face.

And then?  I read this.

“To Evie you are really good with your ipad And you are almost just like us.”

Remember “evelyn: you in a box”?

Remember the big stink I made about compliance training?

Remember the first time I asked, nicely, for the school to reconsider the use of  “whole body listening” social skills training?

Remember all of the times, I’ve talked about the dangers of social skills training?

While, eventually, Evie’s educators accepted my insistence that Evie not be, personally, subjected to social skills training of the “whole body listening” variety.  After complaining several times about the posters all over the schools and not even receiving an acknowledgement of my concerns, I let it go because I thought I had bigger fish to fry.

Let’s talk about the message Evie received.

It may as well say:
“We were told to say something nice about our classmates.  The highest compliment that I can pay you (besides ‘youre really good with your ipad’) is that you’re “almost like us.”  Who is “us”, you ask?  The real people.  The kids that don’t flap their hands, get completely overwhelmed by too much sensory input.  The kids that make eye contact and don’t move their bodies when other people are talking.  The kids that speak and are able to sit in the real people classroom for the duration of the school day.  The kids that don’t need help with personal care.  The kids that don’t have a one on one paraeducator.  Us.

Hey Evie!  If you pay attention to the ‘whole body listening’ curriculum, someday YOU could morph into a real real person.  Pay attention to the posters all over the school.  They are there to remind you (and ‘us’) that you’re ‘almost like us” but not enough.  Sure, we’ve learned to pay lip service to respecting your access needs and we can pretend to be your friends.  But until you really get with the program?

You are OTHER.

You don’t belong.

You’re not a real person.

You are not like us.

Sincerely,
Your very honest peer”

Congratulations school district!  You’ve really and truly taught my child’s classmates not to accept her.

That note and all of its subtext is why I am kicking myself for letting it be enough for Evie not be directly subjected to social skills training.  It is NOT enough.

Because Evie is, very much, a victim of this curriculum.

Evie spends five days a week in a hostile environment created by the insistence that one must conform to arbitrary social norms or be ostracized.  Disrespected.  Dehumanized.

Good intentions are not enough.

So hey school district!  Saturday, we are going on vacation.  When we come back?

I’m coming for you with a scorch the earth policy.

I will RELENTLESSLY shame you for creating a culture of disrespect for my daughter and her tribe.  Much like you shame her.  Because when I asked quietly and nicely for your to reconsider this social curriculum?  You couldn’t even be bothered to respond.

I’m all done with requests.

I’m demanding, with every single resource at my disposal, that you stop teaching children to be ableist.

See you soon!

 

shameful: 2014 Autism Speaks’ financials

Please feel free to republish or share any of the images content in this blog post.  Download a printable pdf flyer.

Autism Speaks:  Your dollars@ work
***The data used to create this chart was extracted from Autism Speaks’ 2014 audited financial statements.  You can find the original data here on Autism Speaks’ website.

Please click images for alt text.
The image is a pie chart in various shades of blue.  The first slice is advertising, marketing and donated media $52,935, 472 with a call out pointing to the slice reading 43.91%.  The next slice is salaries, benefits and payroll taxes $23,300,19 with a callout pointing to the slice that reads 19.33 percent.  The next slice is science grants and awards $15,300,709 with callout pointing to slice reading 12.69%.  The next slice is family services grants and awards $4,631,690 with callout pointing to slice reading 3.84%.  The last slice is everything else $24,379,795 with callout pointing to slice reading 20.23%.

In 2014 (like other years)Less than 4% of Autism Speaks’ expenditures support Autistic people and their families.  Salaries/benefits and associated expenses account for almost 20% of its expenditures.

the image is a spreadsheet graphic with the following figures: Advertising, marketing &amp; donated media $52,935,472 43.91% Salaries, benefits &amp; payroll taxes $23,300,191 19.33% Science grants &amp; awards $15,300,709 12.69% Professional services including donated $5,465,516 4.53% Family service grants &amp; awards $4,631,690 3.84% Supplies &amp; equipment $3,435,590 2.85% Venues &amp; services $2,674,630 2.22% Travel, meals, lodging, transportation &amp;catering $2,568,518 2.13% Occupancy $2,157,190 1.79% Postage &amp; Shipping $960,983 0.80% Donation processing &amp; bank fees $946,242 0.78% Premiums &amp; recognition $941,784 0.78% Printing $855,155 0.71% Conferences, meetings, &amp;sponsorships $842,462 0.70% Merchandising &amp; biomaterials $645,112 0.54% Telephone &amp; Internet $536,014 0.44% Site, audit, licensing &amp; filing fees $498,904 0.41% Legal fees $460,398 0.38% Depreciation &amp; amortization $387,407 0.32% Temporary services $362,888 0.30% Other $267,438 0.22% Photography &amp; videoography $208,305 0.17% Insurance $165,259 0.14% Total 2014 expenditures $120,547,857<strong>The Ugly Truth Broken Down</strong>

 

 

 

 

 

 

 

 

 

 

 

Donate to underfunded organizations that support Autistic people.
AutismWomensNetwork.org
Ed Wiley Autism Acceptance Library
Tone it Down Taupe

 

autcom: how NOT to do it

Please read Kassiane’s full account of the unfortunate events which occurred at the Autcom conference in Manchester, NH.

My very dear friend Kassiane, like my daughter Evie and best friend Sharon daVanport, have photosensitive epilepsy.  Being a photosensitive epileptic means that flashing and/or strobing can trigger a seizure.  Seizures can and do kill people.

Prior to attending the Autcom conference, Kassiane expressed concern that Autcom had not done its due diligence in safeguarding Kassiane and other photosensitive epileptics from the potentially life threatening effects of these very real seizure triggers–although they’d quite literally had years to do so following a past Autcom event where Kassiane was subjected to a board member willfully following her around using flash photography.  I exchanged several emails with Autcom board members in effort to assure no more malfeasance.

autcom emailExactly zero of these precautions were executed.  This resulted in one of the attendants not being aware of the potential dangers of using his flash and doing so in the presence of Kassiane.

 

I woke up on Saturday morning to hear several conversations regarding what had transpired the day before outside of my hotel room door.  These conversations were between Emily Titon, the Autistic president of Autcom, and several board members and/or folks who are involved with the leadership and planning of the Autcom conference.  What I heard was disturbing in a few different ways.

Emily was advocating firmly to honor the promises Autcom made to Kassiane–expelling anyone who broke the rule.  In return, the non-Autistic board members spoke to her as if she is a child–using “special voice” to splain why Autcom could not.  The reasons included that the use of flash photography was not “egregious” and that the person who used it was a popular presenter.  One Autcom board member disclosed, what I can only assume is confidential medical information, about the individual who used flash photography as an excuse for why that person needed to use his camera and indicated that he was not capable of understanding that the use of flash is dangerous–loud enough for me to hear it clearly through my hotel room wall.  Further, there were threats from the non-Autistic board members–that if the rule was enforced, they would leave the board.

I went upstairs to Kassiane and Alyssa’s room to let them know what I’d heard.  I suggested that we not present because I felt like Autcom was handling Kassiane’s accommodation needs with such disregard that there was a real chance that it would happen again.  Understandably, Kassiane did not feel that she should need to leave the space–that the onus was on Autcom to make the space safe for her and other participants.  I made my way back down towards my hotel room  where I met Emily Titon near the elevator.

While speaking to Emily, a former board member and person involved in the leadership and planning of this conference approached Emily and began to berate Emily over her position–I don’t remember, specifically, what she said.  Just that her tone was condescending and disrespectful and prompted me to engage in the following exchange (to the best of my recollection).

Beth:  Don’t speak to Emily like that.
Autcom Person:  I’m being sarcastic.
Beth:  Are you Autistic?
Autcom Person:  No, I’m bipolar.
Beth:  Me too.  But are you Autistic?
Autcom Person:  No, my son is.
Beth:  You don’t get to tell Autistic people how to run their community.  You don’t get to be disrespectful to Emily.
Autcom Person:  You need to treat me with respect.
Beth:  You need to earn respect.
Autcom Person:  What about ___’s (individual using the camera) needs?  He needs to use his camera.  It’s important to him.
Beth:  You can’t honestly be comparing a person’s need to use his camera to someone’s life or death accommodation need.

The Autcom person said something about a rage attack and that she comes to Autcom for peace–that this was the worst Autcom ever.  I said if she was threatening to rage attack me that she needed to walk away.  At this point, she threw her coffee in my direction–it didn’t hit me.  Emily and I went to my room where Emily received a call from Kassiane asking us to come down to the registration table.

When we arrived, Kassiane and several of her support people were engaged in a heated dispute with a couple of Autcom board members.  During the dispute, Kassiane was told that she she should ask the camera flashing participant to “please not use flash.”  I was also told by a board member that there was “not enough time” to execute the steps that I outlined in my email above.  It was clear that Autcom had no intention of doing its job as hosts of the conference.  I asked Kassiane if it would be okay if I spoke to the person that had used the flash.  She agreed.

I found the support person of the person that had used flash and was told that the person was very sorry and that he had put his camera away for the day. Please note, that I spoke to the support person ONLY because the actual person was not there and ONLY in the interest of expediency–we were scheduled to speak in less than an hour.  I do not, in any way believe that this person is not capable of speaking for himself.  The support person indicated that the person who had used flash was more than willing to apologize and make sure Kassiane understood that he would not do it again.

Shortly after, the person approached Kassiane and set her mind at ease.  Kassiane graciously accepted his apology.

The events which occurred at Autcom highlight many of the problems in the Autism community.  We talk about the presumption of confidence, often, in an abstract and idealistic way.  But we need to do much more than talk about it.  We need to do it.  What does that look like in practice?  It looks like those of us who are not Autistic stepping back and acknowledging Autistic people as the rightful leaders of their community.  It looks like those of us who are not Autistic understanding that our roles in the community are support roles.  We don’t set the agenda.  We support and amplify the messages that Autistic people communicate.

When we presume competence, we give Autistic people the space to be human and make mistakes (using flash photography) and don’t rush to defend them with statements that undermine their competence.  “He doesn’t understand.”  or “He isn’t capable of honoring someone else’s accommodation.”

When we presume competence, we know that Autistic people are capable of advocating for their own needs.  “Don’t use flash photography.  It could kill me.”  We honor those needs without question because we presume competence.

We don’t speak to Autistic adults like they are naughty children.  We don’t dismiss the content of their messages because they are angry or because they use language with which we are not comfortable.  When we are called onto the carpet for messing up, we don’t react defensively.  We don’t make excuses.  We apologize sincerely or we don’t apologize at all.  Our sincere apologies are always accompanied by a genuine desire not to repeat the same mistakes–which means we gather the information necessary to make sure that we don’t continue to make the same mistakes.

We don’t ask Autistic people to be patient while we excuse ourselves from wrong doing.  We accept that we are deserving of criticism.  We don’t make it about our hurt feelings.  When we are so caught up in our own defensiveness, we fail to learn from our mistakes.  And we all but guarantee that we will make the same mistakes again.

***Editing to add a link to a post written by a person of color who was asked an incredibly insensitive and derailing question after presenting about his experience as an Autistic person of color.  http://expectedly.org/blog/2015/09/the-autcom-2015-clusterfuck/

Another perspective of an Autistic conference attendee here:  https://wanderingautistic.wordpress.com/2015/09/28/autcom-25-human-rights-for-all/

evelyn: you in a box

Evelyn,

IMG_7825Last week you came home with a piece of paper titled, “You in a Box”.  It asked for things like a sample of your handwriting.  But you don’t have handwriting.  It asked for the box top of your favorite cereal.  You don’t eat cereal.  It asked for a small treasure that you keep in your room.  You don’t keep treasures in your room.

You in a box.  I ignored you in a box.
I got a reminder note about you in a box from your para Friday.
I ignored it again.

I can’t put you in a box.  You spend too much time in the boxes of other people’s making. I’m your mama and I won’t make another one for you.  Another one which you don’t design.

You’re nine years old
In the 4th grade
You’re my first true love
You love Apple products
And Sesame Street
You find shelter IN the wind and rain-not from it
You’re a mermaid living on land
You put your face in fountains
And a trail of blueberries and corn follow you in the summer
You’ve endured
Medical Trauma
Stigmatization
Dehumanization
The presumption of your incompetence
You love your mama and cake
You love your daddy and flinging spaghetti
You love your sister and grilled cheese
You love MaryKate and Cody’s restaurant
You love Heather and hotels
You’re untamed and true
You love shiny surfaces and bubble wrap
You dig in potted plants and sneak icecream
You have wild hair and hate having your head touched
You’re the bravest person I know
And you still climb into my lap
You have beautiful flappy hands
You’re a daredevil
You don’t take shit from anyone
You ‘re my navigator
You’re able
You’re disabled
You’re mischievous
You’re stubborn
You’re non-compliant
You’re perfect
Your sister uses her birthday wishes for you
Because you’re so incredibly loved
Because you’re so incredibly you
You love peanut butter, clementines, and pears
You love to order room service
These are some of the things I know about you
There’s even more that I don’t
Your needs and wants seem small and simple
But you?
You’re big and complex.
And I have way too much respect for all the things that make you, you
For me to even consider presuming that I can speak for you
For your identity
By taking a bunch of objects of my choosing
Cramming them in a shoebox
And calling them, “You.”
No.

 

unfriendly skies: disability discrimination by JetBlue

jetblue bathroom

I’m writing this with an attempt to both shine light on the disability discrimination my daughter faced while flying on JetBlue and protecting her privacy regarding her specific toileting needs.  As such, I have omitted details which I believe would violate her rights.

I am not exaggerating when I say that I could spend 100% of my waking hours filing complaints related to violations of the ADA (Americans with Disabilities Act) on behalf of Evelyn.  Not only that, but I wouldn’t be able to address every single way in which my daughter is discriminated against.

It is notable that Evelyn only uses mobility aids part time.  If she were a full time user, I cannot even imagine the level of discrimination that she would be subjected to.  Further, I have only a broad understanding of the ADA–therefore, only the most egregious violations hit my radar.

Evelyn is only eight–people are more willing to accommodate disabled children.  I am not disabled.  We have resources to challenge discrimination.  Most disabled people, adults in particular, do not have the time, energy, and resources to pursue violations to their rights–say nothing of the fact that they are routinely ignored and/or spoken over.

Because I am not burdened with a long history of violations to Evelyn’s rights–only eight years, I am typically able to gently educate people–given my position of privilege, I feel like I have a duty to do so even when I feel like laying on the floor and pounding my fists into the ground at the injustice.  In general, probably because Evelyn is a child, people are receptive and attempt to accommodate.  But every so often, we encounter discrimination that is so flagrant that I am left with no other option than to pitch a fit.

What follows is my account of one of the two most despicable cases of discrimination that we have faced in Evelyn’s eight years (the other being an experience at Disney World).

Two years ago, when we went to Florida to visit my husband’s parents, we flew on JetBlue.  JetBlue refused to allow Evelyn to preboard with other disabled passengers as she apparently didn’t look disabled enough–although she was a 60+ lb child riding in a carrier on my back.  This year, when we checked our bags, we asked the agent how we should ensure that Evelyn is able to preboard.  She told us that we should merely tell the gate agent–that it would be no problem.  We explained that we had done this previously and had encountered problems.  She told us that it would be no problem.  To make a long story short, on our flight to Florida, we were, again, denied preboarding.  We were able to board after those that purchased extra leg room etc.  This meant that there were already about 20 people on the plane, standing in the aisles, putting their luggage away, and creating further barriers and obstacles for Evelyn.

During our flight down, I discovered that it was no longer possible to provide Evelyn with  the safe and hygenic assistance that she needs in the bathroom because she had grown and the size of the bathroom on the airplane is the size of a postage stamp.  While in Florida, I did some research online as to how to accommodate Evelyn.  I learned that the flight attendants can help to create a safe and private space and that there might be a larger restroom at the front of the plane from folks with disabilities similar to Evelyn.

We were granted preboarding on our return flight–probably because we put Evelyn in a wheelchair instead of on my back.  As soon as we got on the plane, I explained the situation to our flight attendant, Alia.

She replied, “You should have called JetBlue prior to your flight to make arrangements.”   It wasn’t just her words.  It was the blatant hostility in which she uttered them and every word there after.

I told her that it is against the law for an airline to require to prenotification of disability.

She told me that she didn’t know and that she would check with a supervisor.

In the meantime, another flight attendant, Jillian, overheard our conversation and easily came up with an acceptable solution which she demonstrated.  She merely opened both of the rear restroom doors.  This resulted in a private space which sealed both bathrooms off from the main cabin and provided the space necessary to assist Evelyn in meeting her toileting needs.  We agreed that this was acceptable and settled into our seats.

Several minutes later, our fellow travelers had boarded and Alia returned.  From several rows away, Alia loudly informed us that a supervisor was coming to discuss our issue.  We quietly indicated that Jillian had provided a solution that was acceptable.  Alia began speaking to Jillian about it from the aisle–Jillian was in the galley area. Jillian discretely explained her solution to Alia.  Alia, with no regard for our privacy began to rebuff the solution.

She, again, with no regard to Evelyn’s privacy, returned to us and said something to the effect of, “I have two children in wheelchairs.  We always drive because of toileting issues.”

I again explained that it is against the law not to accommodate a disabled person.  At this time, I was speaking about the ADA as I was unaware that there is a different Act governing disability for air travel–the ACAA.

Several minutes later, a supervisor named Frankie made his way down the aisle.  With complete disregard to privacy, he asked us what the problem was.  We were completely mortified at his lack of discretion and quietly told him that Jillian had resolved our issue.  He demanded that we tell him the details of the solution–we quietly requested that he go to the galley and talk to Jillian about it.

He did so–again with zero regard for our child’s privacy.  He loudly rejected her solution and continued to reject it to us.  Loudly, of course.  He told us that the restrooms needed to be “sealed off.”  I explained that Jillian’s solution accomplished this and explained what she had demonstrated.  He dismissed it as a possibility.

At this point I asked him what we should do.  He told us that there isn’t a protocol for this.  I explained that this is a violation of my daughter’s rights as a disabled person, that the result of refusing to accommodate my child could potentially result in a health risk for both her and the other passengers if she does not have access to a lavatory.  He said there is not protocol again and left.

Alia and Frankie treated Evelyn and my family with a thorough lack of disrespect.  I cannot adequately articulate the manner in which their words dripped with scorn.  I feel strongly that they not only denied my child’s rights to reasonable accommodation but that they went out of their way to deny them publicly and with complete disregard for my child’s humanity.  When my child is subjected to such degradation, I am left with the overwhelming belief that JetBlue not only wishes to deny access to the accommodation of the most basic human needs– but wishes to publicly humiliate and punish my daughter and her family for daring to believe that she has the right to travel on one of its aircrafts.

My dear friend, Kassiane, is a disabled adult activist.  She often talks about not being considered a real person.  Her words echoed in my head during the flight and I cried angry, sad, and impotent tears.  Evelyn is not a real person.  For the rest of her life, she can expect to hostility and contempt regarding the accommodation of her needs.  She can look forward to the suggestion that she not do things like fly on airplanes because she is disabled.  She will be regularly dehumanized by public discussions around her toileting needs.  She will suffer the indignities and health risks associated with having her toileting needs disregarded.

Able bodied real people are not subjected to such affronts to their humanities as a matter of course.

Shortly after arriving home, I received a message from a customer support representative.  When I connected with her several days later, I was surprised to learn that she was lead to believe that the reason Evelyn was denied accommodations was due to safety issues.  She indicated that she didn’t understand how safety issues were a concern because no one uses a safety belt when using an aircraft lavatory.  The representative to whom I spoke was understanding and apologetic.  She indicated that she would research the situation and get back to me.  I sent her a followup email after reviewing the ACAA which governs the accommodation of disabled people with my complaints and desired outcomes.
Complaints
1.  Alia’s suggestion that we needed to contact Jet Blue prior to travel seems to violate the ACAA given the accommodation we requested.
2.  The implication that we should have driven rather than flown because of our daughter’s disability seems to violate the ACAA.
3.  Both Alia’s comment that she never had such a question and Frankie’s indication that there is no protocol highlight the fact that JetBlue staff are clearly not appropriately trained as required by the ACAA.
4.  The demeanor of both Frankie and Alia were hostile and their words suggested that our disabled child is not welcome to fly on JetBlue.
5.  The lack of discretion and privacy surrounding our daughter’s disability and personal care needs was dehumanizing and degrading.  I cannot imagine an able bodied person being subjected to such a public and hostile discussion around his toileting needs.
6.  JetBlue failed to make a reasonable accommodation for our disabled child.  Having both doors fully open would have provided the same level of privacy to my daughter and the cabin as would have resulted in an able body person closing one restroom door.
7.  The restroom doors on the rear of the aircrafts have the handicap insignia on the doors (I have a picture which I would be happy to provide if you need it).  This is misleading given the size of the bathrooms–a person requiring assistance and/or a transfer from a wheelchair to the the toilet could not be safely/logistically accommodated.  Thus the restrooms are not accessible.
8.  The result of JetBlue’s failure to make a reasonable accommodation resulted in unsanitary and unsafe conditions for both my disabled child and the rest of the passengers on that flight.
9.  I briefly mentioned yesterday that on our flight from Boston to Ft. Myers on February 21, 2015, we asked the employee who checked our bags how to arrange preboarding given the fact that we were denied this in 2013 on a JetBlue flight (I believe I filed a complaint at that time).  She told me to ask the gate agent.  We identified our daughter as disabled at the gate but were not permitted to board prior to those that had purchased extra legroom and those that had status on your airline.  We were only permitted to board when families with small children boarded.  During our conversation, I believe you used the term “silent board” for the type of board that the ACAA mandates Evelyn is entitled to. This was problematic and resulted in difficulty navigating the aisle due to the passengers that had already boarded.
9.  After reading the entire Act, I learned that a CRO should have been made available to us by phone or in person in Ft Myers after we told both Alia and Frankie that our daughter’s legal rights were being violated.  This did not happen–unless Frankie is a CRO.  If he is, I am requesting that JetBlue confirm that he is a trained CRO and that he has had the training required by law.  Further, if he is, I am wondering why he didn’t identify himself as the airline’s CRO and am expressing my concern that he did not fulfill his duties in this important role and certainly did not demonstrate that he had the training, experience, and communication skill required to resolve complaints related to disability discrimination.

Desired Resolution
1.  That JetBlue develop and share with us a concrete plan for a mandatory and comprehensive training its employees regarding disabled passengers.  The plan should include paid consultation with disabled people representing various types of disabilities (including invisible disabilities like Autism) and consultation with and approval of organizations which are primarily comprised of disabled leadership.  My family is very involved in the disability rights movement and I am happy to provide you with the names and contact information of both disabled leaders and the names of various organizations with whom you may wish to consult.  I believe that disabled people have the most valuable input to provide with regard to the creation of a plan.  However, caregivers may also offer good information from a logistical standpoint.   As the caregiver of a child with multiple disabilities, I am happy to provide (unpaid) input/feedback around the development of a comprehensive training and/or the names/contact info of other caregivers who provide assistance to disabled individuals (both adults and children).
2.  Specific actions taken by JetBlue to address the hostility directed at my child and me by Alia and Frankie.
3.  Compensation for the violations to my daughter’s rights as a disabled passenger,the discomfort and health risks my daughter suffered as a result of being forced to sit in soiled undergarments, the dehumanizing treatment she endured, the embarrassment my entire family suffered due to your employees’ lack of discretion around the discussion of her disability and toileting.

I asked that JetBlue let us know its intentions by March 17th and indicated that we would pursue a DOT complaint and civil legal recourse should JetBlue not choose to attempt to rectify this matter to our satisfaction.

caution: my self is under construction

The title of the image is, "A diagram of my internal real estate."  There is a pink frame around a bunch of multi colored squares and rectangles.  The Pink frame is labeled, " Love & Happiness", The light blue square is labeled, "activism", the Yellow square is labeled, "parenting Evie, the Orange square is labeled, "parenting maxine, the mauve square is labeled health, the blue rectangle is labeled, "everything else", the red rectangle is labeled, "relationships" the maroon rectangle is labeled, "learning and introspection', the purple rectangle is labeled, "leisure and pleasure", the green rectangle is labeled, "cooking, cleaning and acts of surivival."  In the center there is a black square labeled "anger Sadness Hurt."  It is framed by a moss green colored frame labeled "selflessness".

The alt text is enabled and should be available by clicking on the image.

I’m in the process of some sort of major internal renovation.  Like any renovation, it is leaving me feeling uncomfortable, inconvenienced, and sometimes pained.

I’m coming to realize that I don’t have a big enough space within myself for everything that I try to be and do.

I’m in a position where more space is just not available.  Now or probably ever.

 

So I need to declutter–to downsize what I am and what I do.  Because right now, things are kind of a mess inside of me and I’m busting at the seams.  Sometimes, I can’t find parts of me that I need or want.

I’m trying to find a way to internally organize so that I have room for myself.

Anger, Hurt, & Sadness
I’d like to totally turn that black room at the center of my diagram (labeled Anger, Sadness, Hurt) and turn in into recreational space.  Maybe get a trampoline and a fully stocked bar.  But the truth is that I cannot.  I need that space to be set aside for those purposes because if it isn’t, I will end up using other space to hold it.

So I’m giving it a small room.  And I’m strongly encouraging myself to keep it mostly open and to get rid of most of the baggage I’ve got piled up in there.

My most important new rule for my internal organization is not to let that room get so cluttered that I use storage in other rooms for overflow.

Practically speaking, that means I need to keep grudges to a minimum.  Like for Autism Speaks, for instance.  I don’t have room to let personal grudges squat in there.  If someone wrongs me or someone I love?  In most cases, I will endeavor to process it in that room and release it.

In my “relationships” room, I’m adding some space to remember that every person fucks up, that every person has his own baggage, and that there are very few people that are all bad or good.  So forgiveness and understanding will need a good deal more room in there.  Most of the times that I feel wronged personally, over time I come to the conclusion that it was not personal.  It was never about me, it was never malicious,… but the clutter other people can’t contain in their own spaces.

No, that doesn’t mean I’m going to be loving those that maliciously hurt me or people I love.  It means that after my emotions are processed?  They get no space in my house.  Not in that room or any other.

Selflessness
This one is really tough for me.  Because I really do want to do everything.  I want to help everyone.  I want fix everything.  I want to put others before myself every time.

But I cannot.  I’m not that good of a person and I don’t have enough space to be that good without seriously compromising other aspects of my life.  So I need it not to have a ginormous gymnasium size room.  I need some smaller rooms for other important parts of me.

At the same time, I need to give selflessness space because I’d like not to totally suck at being a human.

So in real life, this is going to look like me learning to say, “no” sometimes.  Often even.  It is going to look like me not trying to fix everything for everyone all of the time—which usually ends up backfiring and being entirely unhelpful anyway.  It is going to look like me prioritizing myself and my feelings at times–and learning to do away with the guilt that I sometimes feel for doing so.

My Kids
I’m giving them room within myself.  But they are the exceptions.  They can go anywhere in my house at anytime.  If they need more room, they get it.

Love & Happiness
I’ve never found the right room for love and happiness.  I think that is because they are meant to be strong and thick and solid walls–not a room.  To keep the important parts of myself in and to to keep the things I don’t have space for out.

So that’s my DIY internal improvement project.
I’ve needed to renovate for a very long time.  But there has always been something that I let prevent me from doing so.  But over the past week, thanks to my dear friend Leah from 30 Days of Autism, I’ve figured out that I need to come up with the personal currency to do it.

Now not later.

Because I’ve fallen off the cliff to often.

And because I need my kids to see me saying, “no”, setting personal boundaries, and otherwise respecting myself and what I need.  My telling them that they are entitled to these things themselves is not enough.

I hope that you will like the improvements I am attempting to make.  But mostly, I’m hoping that I like them–that they are practical and livable and enduring.  I’m also hoping not to have to call in professionals but am not above that if this project is too big for me to undertake alone–with the support and love of my friends and family of course.

buoyancy: now we float

image is a golden body of water with an opaque heart appearing to float.  The text on the heart says, "now we float."  in the bottom left hand coner, text reads: "loveexplosions.netIt is gone now.  But I still remember that feeling of endless pressure.  The weight simultaneously pushing and tugging us down.

Insistent.  Unyielding.  Relentless, in its effort to sink us in a sea of our own tears.

Yeah, I remember that.

I hope Evie has forgotten.

 

Evie was a tiny baby when we started getting the message that something was “wrong.” That Evie was “broken.”

With the simultaneous message that we could “fix her” with therapy.  But that we needed at act quickly.  We needed to intervene before the developmental window slammed closed.

And of course, this message was not delivered in those words.  It was delivered gently by kind people with the very best of intentions.  And maybe that wasn’t even the message they wanted to deliver but that was what I heard.

So the early intervention started.  Really early.

I remember spending countless hours obsessing over Evie not being interested in stacking blocks or scribbling on paper.  I believed that if she didn’t do these things, that she would never do anything that “comes after” on the developmental timeline.

I remember stressing out that Evie wasn’t interested in toys.  Because that is what babies are supposed to do–be interested in toys.  I remember spending a small fortune trying to find that toy that would break through the divide and engage Evie.
I remember the longest questionnaires aimed at assessing Evie’s developmental age.  But serving as a reminder that Evie was broken, that I was not doing enough, and that we were inching ever closer to that moment in time that the developmental window would go slamming shut forever.

I remember all of the therapy sessions.  The hours and hours of therapy.  And the therapy “homework.”  And the guilt no matter what I did.  Guilt when Evie would cry and protest.  Guilt when I wouldn’t push her to do her homework.

I remember making comments about wanting to ease up on therapy.  Wanting to give Evie more time to be a baby/toddler/kid.  And I remember the gentle reminders about the developmental window.  And the threat of regression if we eased up.

Evie didn’t start crawling until she was about 18 months old.  As I mentioned before, Evie didn’t do toys.  But she did do books.  She loved books.  We spent hours and hours reading books together.

One of the books that I bought when she was a tiny newborn, “And Here’s to You!” was her favorite.  As soon as she could communicate her choice, that was it.

And we read that book over and over again every day, along with a few other favorites.

Was this need to read this book repeatedly one of the first signs of Autism?  Probably.

But it was also much more than that.

image is a yellow children's book.  There is an illustrated person with arms wide open.  The title of the book reads, " "And here's to you.

 

“And here’s to you!
The You Person!
You!
Here’s to the sweet you,
The messy and the neat you,
The funny way you eat you,
The head to your feet you,
The bones and the meat you,
The total and complete you.
Oh how I love you!
The You Person!
You Person You!
Yes!
You!
I love you.”
(excerpt from david elliot’s, “And Here’s to You!”)

 

These were the words that Evie needed to hear.  The words that I needed to repeat and repeat and repeat.  Not to make them true.  But to keep them true.

It might not have been the words.  It might have been her picking up on the feelings of deep and unconditional love that they evoked in me.

Those were part of what kept us floating.   And safe from the words that threatened our buoyancy.  Words that conjured feelings of brokeness.

Those were the words that probably planted the first seeds of rebellion.  Rebellion against the system that insisted that Evie be fixed.  Insisted that she needed to develop according to that specific timeline or not at all.  Rebellion against the notion that we needed to treat, intervene, and fix.  Rebellion against the message that she is–that we both are broken.

Rebellion against compliance.  Hers and mine.

I’m so thankful for that simple beautiful book.  For being an anchor.  To Evie for gravitating towards it.

Because sometimes we used to sink.  Now we float.

 

 

owning it

Hindsight burns my eyes.  My post, yesterday, about the feelings of being pulled down when Evie was teeny tiny resulted in me rereading my earliest posts.

Each time I do that, I cringe.  And fight the temptation to edit–to revise my history.  Some of the stuff I wrote is damn embarrassing.

Like the one where I preach person first language.

Or the one where I laugh at my husband for labeling Evie as “high functioning” and proceed to “accept” inevitable incompetence.

Or where I talk about Evie living in her own world.  There are actually lots of those, I think.

Anyhow, you get the picture.  My thinking has evolved quite a bit.

I know that it continues to evolve and that I will probably always want to edit my evolution. That this very post will very likely mortify me in some way if I read it three years from now.

It feels like I have always felt the exact way that I do today.  About everything.

The old posts serve as a reminder that I didn’t.  And that there was a definite turning point–when Autistic adults reached out to me.  You can see that turning point and the first overtures that my Autistic friends made to me in the comments here.   You can see where Cynthia reassures me that Evie might not be lonely as I had indicated thinking in that post–but content to be alone.

What you don’t see, is the private conversations I had with people like Sparrow and Alyssa.  People who gently and lovingly taught me about things like the problems with person first language.

Sometimes, I’m too hard on people.  I don’t remember what it was like to not have a community of Autistic adults supporting me.  I forget that almost everything works against parental understanding and acceptance of Autism.

Sure, some people need a hard hitting wake up call to see the light.  Some will always live in the dark.  But others need what I was blessed to have–the loving support and guidance of Autistic people and parents like Heather, Michelle, and Ariane.

I was given a chance.  I believe that, for the most part, I’ve honored that chance–made good on the leeway I was given for my ignorance.  I need to extend that some leeway to other parents–not the ones who take the chance and spit on it.  But the ones who haven’t had the opportunity to be supported by the community of people that promote the love and acceptance of Autistic people.

I need to give other parents the opportunity to learn and grow without automatically condemning them for that which they don’t naturally understand.  Like I was given.  And continue to be given.

So that’s me owning my history.  And me apologizing for berating those parents who simply have not been given the opportunity to parent with the support of a community that advocates love and acceptance.

This is me committing to giving parents (those that are receptive) the road map to community and the space needed to evolve.

Mostly this is me being grateful for the community that embraced me.  Embraced my family.

ability to love: presume competence

photo is of a school age child kissing a preschool age child.  The text reads:  “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,” she told NBC News. “That is one of the most difficult things for mothers.”  False  Dee Shepherd-Look

I went offline for about 24 hours and came back to another true story about a mother murdering her Autistic child.

And right now, I can’t regurgitate the same things I’ve been saying every other time an Autistic child is murdered by his/her parent.

I just can’t.

What I can do.  What I want to do.  What I need to do is unequivocally deny the claim made by Dee Shepherd-Look regarding Autistic children.  In an interview with NBC News, she said that she was surprised that Autistic children are not murdered by parents more often and, “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,” she told NBC News. “That is one of the most difficult things for mothers.”

She’s an expert who runs an “education group for mothers of Autistic children.”

We don’t need more uneducated experts dangerously mis-educating parents and the general population about Autistic people.

Autistic people love.

Autistic people are perfectly capable of reciprocal relationships.

Take it from me.  I’m an actual expert on having reciprocal relationships with Autistic people.

I’m in many, in fact.  Loving, two way friendships with the most lovely people–Autistic people.

And I am in a loving relationship with my Autistic daughter.

My Autistic daughter loves.  That picture above?  That’s her loving her younger sister.

She lavishes love and affection those close to her.

She loves.  She loves.  She loves.

Don’t tell me she doesn’t love.

She LOVES.

Think Autistic people are incapable of loving?  That says more about you than it does about the people you’re mis-characterizing.

*** I don’t have the energy to devote to critiquing murder apologists.  But others have done a heartbreakingly wonderful job.  So if you’re inclined to say, “Walk in the mother’s shoes” after reading about a 6 year old being tossed 130 feet off a bridge into ice cold water by his mother?

First read this:
Here, try on some of my shoes.”  by Radical Neurodivergence Speaking

Then read these which are specific to London’s murder:
Not again…#Justice for London” by Kimberly Faith of Eccentricities and Introspection
#JusticeForLondon” by Heather of Raising Rebel Souls
“.…I dare you.” by Michelle of Amazing Adventures Parenting Autistic Children
Murder of London McCabe, Age 6” by Paula Durbin Westby
Faces” by Lei of Autistic Times Two
Another Child” by ischemgeek

#JusticeForLondon