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 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

 

oops they did it again: Autism Speaks’ 2013 financials just released.

The numbers used to analyze Autism Speaks’ spending were taken from its 2013 audited financial statements.  The report is available on the Autism Speaks website here.

2013 as love expSo Autism Speaks finally released its audited financial statements.  I wish I could say that I am surprised by their brazen irresponsibility.

Instead of rehashing their sordid history, I’m just going to get tacks.

Because really? What can I say that hasn’t been said thousands of times over?

Read it and weep folks.

Lets start with the consolidated expenses shall we?

Ugly truth

Family Services Grants & Awards:
Don’t forget, this is the ONLY portion of Autism Speaks expenditures which directly support Autistic people and their families.  A whopping 4% of Autism Speaks expenses were incurred directly supporting Autistic people and their families.

Did you get that?  Year after year the largest charitable organization purporting to serve Autistic people and their families thinks it it is acceptable to spend under 4% of its budget on directly supporting Autistic people.  And yes, I said “under 4% because I round up when calculating this using the consolidated expenses on their financial statement.

Text reads:  What is wrong with this picture.  Expense	Total Spent	Percent Total  Advertising and donated media	$52,229,994	43% Everything else	$25,085,273.00	21% Salaries, benefits, &payroll taxes	$23,300,191	19% Science grants & awards	$15,300,709	13% Family service grants and awards	$4,631,690	4% Total Expenses	$120,547,857

Advertising and donated media
I’m terrible at math.  But according to the 2012 consolidated financials, Autism Speaks spent $2,212,520 on advertising.  In 2013 it spent $52,229,994.

Is that not a 2,260% increase in budget?  That’s outrageous even without considering the relative pittance it has spent on providing meaningful supports to Autistic people and their families.

We’ve all seen the damage that Autism Speaks does to Autistic people and their families with their brand of “awareness” advertising.

Salaries, benefits, and payroll taxes
$23,300,191.  
Need I say more?  We have already seen the salaries top executives are paid on previous 990 filings.  Autism Speaks has not published its 2013 990 to date.

It is also notable that there are several “related party transactions.”

NOTE 9 SPECIAL EVENTS - COLLABORATIVE ARRANGEMENTS (continued) The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to The Marcus Institute, the co-founder of which is an AS Board member. The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of New York Presbyterian Hospital. The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.

And there are more related party transactions where institutions affiliated with members of the Autism Speaks Board of Directors and members of management received funding.
Five members of the Board of Directors of AS and two management employees are affiliated with institutions that received funding from AS. At December 31, 2013, AS had grants payable and commitments to these institutions totaling approximately $5,532,344. During the year ended December 31, 2013, AS’s expenses included approximately $3,669,960 related to awards granted to institutions affiliated with an AS Board member or management employee. Certain members of AS’s Scientific Advisory Committee and Scientific Review Panel, which are involved in the grant appropriation process, are also associated with institutions that receive funding from AS.

Science grants & awards
Science and grant awards spending was actually slightly less in 2013 than it was in 2012.  It went from $15,790,797 to $15,300,709.
Their science is scary in that it aims to eliminate Autistic people.  Of course they would continue to refer to them as a “crisis” and “puzzle pieces” in spite of being harshly criticized for their treatment of Autistic people.
This is from the mission statement on the 2013 Annual report they just released with the financial statement.

Our Mission We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks continues to blatantly disregard Autistic people.  They also brazenly disregard the criticism they’ve received over their financial practices, treatment of Autistic people, and usage of negative rhetoric.

They lost two corporate sponsors in 2014–that we know of after intense pressure on the corporate sponsors to sever ties.  Both Panera Bread and Build-a Bear-Workshop lead the way in what must become a mass corporate disassociation from Autism Speaks.

Autism Speaks tells us year after year and time after time that in all things, they have no intention of changing.  It’s time to breath some life back into our grassroots #BoycottAutismSpeaks movement.
Image description:Text reads: If you donate $100 to Autism Speaks, how will it be spent? According to the 2013 financial statement just released, it will look like this: $43 will be spent on advertising and media. $19 will be spent on salaries, benefits, and payroll tax. $13 will be spent on science for cure, prevention, etc. $4 will be spent directly supporting Autistic people. $2 will be spent on travel, meals, catering, etc. $19 will be spent on everything else. Is this what you have in mind when you donate? #boycottautismspeaks

Tongue in cheek: Autism Parenting Olympics

autism olympics

Some of you might have heard that I am trying out for the Autism Parenting Olympics team.  I think that I have a really good chance of standing on that podium or getting darn near close to it.

If I medal, I will be sure to get endorsements from all of the martyr mommies out there, so I am really excited about that.

But the real prize?  It is the honor of having a child who is Autistic enough for me to be able to speak with authority on the topic of effective parenting strategies.

I know that I will have to sacrifice a lot in order to be a contender–my child’s privacy, dignity, trust, and a little lotta bit of her humanity.  But it will be so worth it when the other parents pat me on my back and tell me that I really do have the hardest life of any parent because I will have proven that I have the most Autistic child in the Universe.  And beyond.

I have some definite strengths which will be easy and high scoring points.  My child is non-verbal.  Score BIG!  She needs around the clock support.  Score!

She has medical co-morbids like Epilepsy which will help me rack up some points.  I do need to work on using Autism and her co-morbid conditions interchangeably if I want to receive top marks.

She has a history of sleep disturbances but has been sleeping well lately.  With any luck, she will stop that so I can score the maximum sympathy points.

My biggest weakness is that poop smearing is not a problem for us.  However, she does enjoy smearing yogurt.  I wonder if I could parlay that into at least a few points if I don’t let on that I encourage this sensory exploration?

I’m training rigorously by reading lots of blogs written by previous medal winners and am even watching other contenders train on their blogs.  I have to admit, they set a really high bar…the level of exploitation is absolutely exceptional.

But I am confident in my ability to overcome this obstacle of being happy.  Especially if I throw  20+ hours of expensive abusive therapy into the mix.

Please wish me well on my road to Autism Olympic gold!

a thing experts don’t talk about: Auditory Processing Disorder

****All images in this post should be accessible and coded with alternative text.  Please let me know if you have difficulty.

image of street signs named: "unsure" "confused" "lost" "unclear" and "baffled"

Auditory processing refers to the way that sound is processed after it is heard. A person with Auditory Processing Disorder may have difficulty interpreting sounds they hear–often related to speech. The structure of the ear can be typical while the person experiences varying degrees of difficulty making sense of the sound.

I’ve been giving a lot of thought to raising happy and safe Autistic children.  Happy and safe children make parenting them a lot less stressful.  So I’m raising a topic that I think plays a major role in the lives of many Autistic children (and adults) unbeknownst to the parents.

It is important not just because it affects communication abilities but because it can lead to extreme frustration and other emotions which can result in unexplained behavior.

Auditory processing difficulties.  I don’t know why there is not more of a focus on this as a frequently occurring disability secondary to Autism.  In my experience it doesn’t even seem to be on the radar of most professionals.

I will share our diagnostic experience and then some really important things that Autistic adults shared with me about APD.

Special thanks to H for sharing his images.
Read more at Thirty Days of Autism.

 images from "Dear Teacher: A letter from H" of Thirty Days of Autism

images from “Dear Teacher: A letter from H” of Thirty Days of Autism

Our experience getting Evelyn diagnosed:

Evelyn “passed” her newborn hearing test.  When she was about three, we started to notice that she didn’t seem to hearing when we talked to her.  We wondered if she was experiencing hearing loss and had her tested again–even though we noted that she heard other noise.

She “passed” the screening again.  Her neurologist thought it was worth having an ABR hearing test.  This is done under sedation in young children and tests the way the hearing nerve responds to different sounds.  She “passed” that too.

 "Dear Teacher: A letter from H" of Thirty Days of Autism Click Image to visit Thirty Days of Autism.

images from “Dear Teacher: A letter from H” of Thirty Days of Autism

After she “passed” that, we were lead to believe that she was simply ignoring us.  That this was a behavior.  That it needed to be corrected…ABA was apparently the only way to do it.

Fast forward to last school year.  Evelyn was seven.  I went away for several days which I don’t normally do so it was a big deal.  When I came back, Maxine met me at the door and we had a loud greeting.  Evie was sitting on the couch playing with her ipad.  She didn’t even look up.  I started greeting her excitedly.

She didn’t look up until I bent down in front of her and put a hand on her knee.  She didn’t know I was there prior to that.  I know this because the moment I touched her, she lit up, threw herself at me, and didn’t let go for several minutes.

She wasn’t ignoring me.  She didn’t process what she heard.

Because I knew nothing of the possibility of auditory processing difficulties, I had a difficult time wrapping my brain around what was happening.  We knew she could hear because she had all of the tests.

Over the next several weeks, I began “testing” her.  I would offer her something desirable.  She wouldn’t respond without a visual cue.  These were words that I knew that she comprehended.

I raised the question at a school meeting.  One of the people on her team responded that the team agreed that Evie didn’t seem to process language.  I was floored.  How had this not come up?  How was she not receiving accommodations for this?  They told me that only a neurologist could diagnose her with “central auditory processing disorder.”

We went to her neuro.  The diagnosis process looked like this:  I told him what we’d experienced.  He said she has Central Auditory Processing Disorder.  He wrote a letter to school saying that she needed accommodation around this disability.

When I think of the ramifications of our failure to detect this disorder, I could cry.  Not just the ramifications on speech, language, and academics.  But the assumptions everyone made about the function of her behavior and all the ways Evie was offended by those assumptions.  This was not Evie being stubborn. This was Evie being disabled in a way that no one seemed to acknowledge as worthy of support.

Lots of Autistic adults were kind enough to share their experiences around APD with me.

As I mentioned, a person could have perfect structural hearing and still experience APD.
You can read Alex’s blog here.
The thing is, I don’t have hearing problems. I can pick up faint sounds like the clock ticking at home. I score in the average range in hearing tests. But if somebody says something while the TV is on – or there’s music playing or other conversations going on around us – then although I can hear all the sounds, I can’t separate them very well. It’s a problem with processing the sensory input and I find it hard work and very frustrating, so I often keep out of conversations in noisy environments. In fact I prefer to avoid noisy social environments altogether.

So what happens?

A Greater Boston Area Attorney, Mandy, said:  "APD is an inability to prioritize sound."  There is a white figure holding a brain and a megaphone in the lower left hand corner.

Imagine trying to process what someone is saying when every other sound in the room is competing with that speech.  You are unable to block out the other sounds enough to comprehend the speech.

Read Chavisory’s post here.
-Auditory processing issues:  The way I filter and understand auditory information is different…and hard.  I don’t seem to naturally prioritize human speech; I have to consciously attend to that.  I don’t have perception of background vs. foreground noise; I hear everything at what a perceptive sound designer once called “equal presence.”  I also don’t conglomerate background or ambient noise into a collective din…I hear every single separate thing.  I have visual hearing…if I don’t have a concrete visual or at least a mental visual reference for a word or sound, I *cannot* differentiate it.  Basically, if I haven’t seen it before (and not just heard it before), I have a near-zero chance of understanding or being able to differentiate the sounds or syllables.  I hear in vowels, as I’ve read some other autistic people do…I mean I hear consonants, but I don’t process and translate them as readily and often have to more deliberately “patch” them in to my understanding of what’s being said to me.  The acoustics or reverberance of a room can profoundly affect how well I can hear—and therefore mentally function—in it.

 

Jennifer Muzquiz is an Autistic activist.  She said:   It is very difficult for me to process spoken language when I am lacking spoons or when there is a requirement for overwhelming sensory processing. If there are distractions (other noise, something catching my eye, something else on my mind, etc.) or I'm not in a place where it's appropriate to stim in order to regulate my focus, speech is the first thing to go... both the ability to listen and to be verbal. I can't carry conversations or even be attentive to someone speaking to me. It makes me very self-conscious and starts a rapid downward spiral to feeling like a failure, because I can't "function" as expected. This causes me to lose even more focus and switch to introvert mode, which blocks out all ability to listen/speak. Bring on the agoraphobia! It is important to note that auditory processing abilities are not static.  They can vary depending on the situation and day.

Amy blogs at Non-Speaking Autistic Speaking.
Amy Sequenzia is a non-speaking Autistic Activist.  She said:   I don't process spoken language most times after seizures. Sometimes for a long time. If I am in pain, like when I had gallbladder pain, I could not understand anything it was said and typing was only possible using one or two words at a time. Overwhelming places make me shut down to protect myself. The times I was being physically abused also made me rely on the visual.

Sparrow blogs at Unstrange Mind."It gets so frustrating when people don't understand or believe what hearing is like for me. Especially with the CAPD because it gets better and worse, depending on environmental noise, stress levels, etc. and society still has zero concept of a disability that is not static."

I would feel so incredibly frustrated if people attributed manifestations of my disability to behavior.

Lei blogs at Autistic Times Two.A lot of people think it's avoidance or me being rude or my favorite "being hysterical", but putting those kinds of demands on me when I already asked you to stop is actually pretty rude, I think. #socialskillsforallistics

And then there are the people that presume that you’re incompetent.

Cynthia blogs at Musings of an Aspie.
There is a white character down in the right hand corner holding a megaphone and a brain.  The text reads:  "Cynthia is an Autistic activist and published author.  She said:  'A note of condescension slips into the other person’s voice. I  may suck at reading body language, but I’m pretty good at gauging voice tone. Maybe they start speaking more slowly or repeating themselves. They downgrade their vocabulary to smaller words. They repeatedly ask questions like, “are you following me?” and “does that make sense?” They get pedantic, having decided I require some sort of instruction.  In short, they’ve decided I’m a little slow on the uptake.'"

Also from Cynthia’s post on the topic:There is a significant disconnect between my verbal skills and my intelligence or literacy or whatever you want to call it.

Every Autistic adult I spoke with seemed to experience some level of auditory processing difficulty.  It stands to reason that Autistic children experience the same.

Children might not have the ability to communicate this disability.  And it might be difficult for adults to pick up on because it is not necessarily constant.  And if the hearing tests come back “normal” and professionals don’t seem to be talking about it….

We are left with an unaccommodated ability which is often written off as behavioral issues.
And of course there is the frustration that is certain when a disability is not supported appropriately which could easily contribute to “behaviors.

Failure to diagnose and accommodate APD can lead not just to frustration, but to difficulty and/or failure to make academic progress.

Say nothing of the social implications.

Auditory Processing Disorder.  It is a thing for Autistic people–including kids.

Next post, I will talk about helpful coping strategies that Autistic adults shared with me.

 

trust: i can’t

i can't

pink square with a darker pink faded spirograph. The text reads: “When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.” Kassiane blogs at timetolisten.blogspt.com

Today when I picked Evie up from school, her para educator said that Evie had “flopped” when they entered the grocery store on her community outing.  Evie’s para is new (to her) this year.  We had an interesting conversation about the incident which I think reflects a common problem in communicating with Autistic people.

Her para indicated that Evie doesn’t flop in the other grocery store that they go to.

I thought for a moment and said, that the grocery store they went to today is quite a bit brighter.  Meaning there are tons more fluorescent lights.  I explained that it was likely a sensory/neurological thing.

That Evie was communicating, “I can’t.”

Her para was very receptive to this explanation and communicated that she hadn’t thought about this as a possibility.  I am very grateful that she didn’t insist on writing the “flop” off to as a bratty protestation behavior as some educators have been prone to do in the past.

I explained to her that sometimes, it is pretty clear when Evie is communicating displeasure.

For instance, sometimes she will request ice cream.  If I tell her, “no” and offer her another cold choice like ice or a popsicle , sometimes she will “flop” in front of the freezer.  She currently does not have access to communication robust enough to argue like a speaking child might.  “Why not Mom?  It isn’t fair.  I really want ice cream” etc.  Her “flop” in this case, likely serves as that argument.

However, most of her flops communicate something else entirely.

They communicate, “I can’t” or “This hurts” or “This doesn’t feel good to my body.”

Like I suspect was  case in the grocery store today.

In my experience, educators are trained to overlook these communication possibilities.  Everything is a “protestation behavior.”

Autistic children aren’t trusted to say what they are and ARE NOT able to do.

The, “I can’t” can be especially hard to recognize because it isn’t static.  One day Evie might be able to go into that grocery store.  Another day, she might be tired, overstimulated, etc. and just “can’t.”

Evie doesn’t do much flopping when she is with me.  Usually, in fact, it is of the protestation variety (I believe it is healthy and appropriate for her to test boundaries and debate my, “no,” periodically so I am actually happy to see her do so).

I believe that there are multiple reasons that I see less flopping of the, “I can’t,” variety.
1.  I read this really great piece written by Kassiane (an Autistic adult) about part of presuming competence being not just about what she can do.

“When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.”

I know Evie well enough–spend enough time with her– to pick up on her other “I can’t” communication before she gets to the flop phase.  Chances are, I would have picked up on the signs that Evie couldn’t deal with the grocery store before we got in and as such, I we wouldn’t have gone in.  I’m her mom, so a lot of that is also probably intuitive.

2.  I think it takes a long time to get to the place where reading the “I can’t” communication comes somewhat naturally.  As her mom, I’ve had the pleasure of spending most of her life with her.

3.  I trust Evie to make “I can’t” decisions.  Evie trusts me to honor those decisions.  As such, I think she pushes her own envelope when she is with me at times.  Probably because she knows that the moment she communicates, “I can’t” I will likely understand and swiftly respond.

4.  At home, there is a great deal less pressure on Evie.  We are more relaxed.  Schedules are flexible.  Etc.  So she is less likely to become over stimulated or fatigued than when she is at school.  In short, the environment is completely different.

Autistic kids are human.  They are capable of being grumpy.  Having bad days.  Testing boundaries.  Being stubborn for the sake of it.  Of course they are.

But it doesn’t happen, nearly, to the degree that educators and parents are trained to believe it does.

Making erroneous assumptions about communication is dangerous.  More importantly, perhaps, it erodes the possibility of building and/or maintaining trusting relationships which can have dire consequences for the child and for the educator/parent/who ever.

“I can’t” is a survival instinct.  Working to extinguish an Autistic child’s “I can’t” is a threat to his/her well-being.

 

beautiful truth: i wouldn’t change a thing about my child

Image is a of a pink earth.  Text reads: "I wouldn't change you for the world.  I'd change the world for you.

Image is a of a pink earth. Text reads: “I wouldn’t change you for the world. I’d change the world for you.

Yesterday, I was scrolling through my Facebook news feed and saw that my friend, Jennifer–an Autistic activist, was upset by a blog post written by a popular blogger.  Basically, the post was calling out parents like me that don’t want to change our kids.  He says we are lying.  I wouldn’t care except for the fact that my  friend Heather refers to him as the “Prom King” of parents to Autistic kids because he has such a huge following and hero worshipers.

He relied on the tired old premise that those parents that don’t want to change their children do not have the same kind of Autistic child as he has.  Meaning “too high functioning.”

People like my daughter and Amy Sequenzia are routinely written off because they don’t speak and they need support in caring for themselves.  I’m sure that Evie and Amy (both have Epilepsy) would agree that some of the medical comorbids like Epilepsy, that are often mistakenly considered part of Autism, really do suck.  If I could take away my daughter’s Epilepsy? It would be gone in a New York minute.

But.  BUT.  Loving and accepting my Autistic child is not just something I say.  I’m not trying to convince you.  Or myself.

I am repeating my beautiful truth.

And I am hoping for your child and every other Autistic child that it will be your beautiful truth someday too.

You’re confused?  Still?   Let me help.  Again.  This is worth repeating over and over again.

I wouldn’t change my child does not mean I don’t want my child to learn and grow.
I fight for my child to be given the tools that she needs to develop and learn.  Don’t confuse my fight for her to be given the tools to access education with a desire for her to be neurotypical.  Don’t confuse my fight for her acceptance with a lack of interest in her educational progress.

Autism is not comorbid medical conditions.   Autism is not Epilepsy.  Autism is not sleep disturbances.  Autism is not gastrointestinal issues.  I like the way Nick defines Autism the best.  You can read his entire “What is Autism” article on his awesome blog, “NeurorCosmopolitanism.”

“Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”

Wanting my child to progress is not the same thing as wanting her to be “typical.”  I want my child’s ability to communicate to progress.  I don’t care if she progresses by typing.  I don’t care if she progresses by using picture icons.  I don’t care if she begins to speak.  I don’t care if she begins to write messages in the sky–except that this is not an accessible communication tool for her.  She can progress towards goals that are different than the ones you have for your child.  And it is still progress.

I’m not acting so damn strong.  I am so damn strong.  For me, strong is knowing that I am a better parent when I use antidepressants to control my anxiety and help me sleep.  Strong is knowing that I cannot do this alone and not being afraid to ask for help.  Strong is respecting my child’s privacy and reaching out privately to those that can help me with challenges.

We don’t have “horror stories” involving Autism.  We have challenges that we work through.  We have ups.  We have downs.  We have successes and failures and all of the stuff that comes with each.  We have horror stories about how my child is treated.  Oh yes.  And we have horror stories about the ways that my words are twisted and misconstrued and taken out of context when I say I don’t want to change my child.  Yep.  Yep.

I’m not fighting insurance companies for more coverage or more services.   It is mandatory that insurance cover ABA services here in Vermont.  WE DO NOT USE IT because we wouldn’t change a thing about our child.

I wouldn’t change a thing about my child.  You don’t have to believe me for it to be true.