Sunday, November 30, 2014

Autism Parents, Self-Advocates, and Shared Concerns

Shannon Des Roches Rosa

Let me tell you something that may or may not surprise you: When it comes to public discussions about autism, parent and professional voices tend to dominate, and autistic voices tend to be excluded. While that dynamic is changing, primarily due to autistic advocates' refusal to be sidelined in stories about their own community, and in part through the many communities that encourage parents to discover, listen to, and respect the experiences of those who have lived autistic lives -- autistic voices too often still get dismissed, ignored, or outright disrespected.

I'm not begrudging parents of autistic kids the right to tell their own stories from parent perspectives, obviously, being that I'm one of those parents myself. But I do find it unsettling when parent stories mention autistic perspectives only to belittle or reject them, as Anne Spence did recently in her otherwise thoughtful story When He's Older and Doesn't Have Autism Anymore:
"There are people in the autism community who make parents of autistic kids feel ashamed and guilty for wishing their child didn’t have autism. Autistic self-advocates who scream “That means you hate us as people!” and “You hate autism? Then you hate your kid!”
"Well, I’m calling BS."
Believe, me, I consider it totally reasonable to have feelings about parenting a child with disabilities (and that child's siblings) in a society that treats those kids as special angels or pariahs, and rarely as human beings with feelings and rights. It's totally reasonable to be pissed as hell about the difficulties our kids face every day because that society considers their needs and rights afterthoughts or annoyances -- if those needs and rights are considered at all.

But it's not acceptable to revile autistic self-advocates as a group, given that they more than anyone else understand what it feels like when society dismisses and mistreats someone because of their autism. Nor is it acceptable to ignore thoughtful perspectives on why saying "I hate autism" is hurtful to autistic people. It is especially not acceptable given that autistic writers so often share their life stories in the hope that today's children will have a chance at being better understood and accepted, and be able to live comparatively happier lives. 

Nor is it fair to characterize autistic self-advocates as being in denial about autism and disability. Consider this message from the autistic author of the blog Real Social Skills, from the post You don’t have to like being disabled:
"Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled."

It's also unfair to frame self-advocates as the enemies of parents, given that the autism parent community includes autistic parents of autistic kids. Parents like Becca Lamont Jiggens, who had this reaction to Spence's article:
"Why, as a community, are we still surprised that autistic people take language literally and are supremely sensitive to perceiving criticism?

"As a parent, I fully understand this piece.

"As an autistic adult, I fully see the offensive spin in it.

"The emotional reactions of a 9 year old boy do not occur in isolation, and are well informed by the ableist construction of society and social expectations. It is only by comparison to what is deemed 'normal' that any value judgement can take place to elicit an emotional reaction. Significantly, too, the emotional reactions of a nine year old will necessarily have a major impact on the emotional and psychological development of their younger sibling which isn't considered at all in the piece.

"No-one would suggest an aggressive attack against a young boy for expressing an emotional reaction. However, if that emotional reaction would hurt someone else, a parent's job is to help the child stop having or displaying the hurtful emotional reaction.

"An analogy: If a child was happy because of a sibling's failure, any parent would act to teach the child that being happy about their sibling's failure is hurtful to their sibling, and therefore not an acceptable emotional reaction to have or display. As parents, we take action when our children have inappropriate, hurtful or otherwise inappropriate emotional reactions because providing that kind of moral and social education to our children is our job as parents!

"I hear the call of fellow self-advocates to NT parents to be 'Change the world not your child.' So there's something that I don't think NT parents grasp in the way it is intended about adult self-advocates calling on parents to create that change in the world, and be an active part of making the world a better and easier place for autistic people to live in.

"With the current UN women's rights campaign He for She, perhaps now is a good time to re-frame the interaction between self-advocates and parents.

"Something like You for Me?

"Autistic people alone cannot create a world where autistic people and non-autistic people can live well together, we NEED the help and support of non-autistic people to create the world in which autistic children and non-autistic children can grow up with an equal expectation that their needs will be met and that an equal expectation that they can live their life on their terms."
And then there's the Wheaton's Law aspect, as per autistic self-advocate Patricia George Zwicker:
"We are self advocates because no one else was there for us, does no one get that?!?! Do you know what we have to go through to even get the ability to rise up and advocate for ourselves. Parents have the community of parents. What do people like me have? 45 yr old, dx in my 40's, no kids, no resources, only my ability to use my "voice" to try and not have another person end up like me. Adult autistic burnout kills us. Mine manifested as a 50 minute seizure, needed to be placed in a coma. So I fought damn hard to even be here typing this. Taking a go at my advocacy is paving that road for autistic children as they become adults.

"Want to know why I self advocate? What drives me? I self advocate because if I didn't I'd be dead. Period. No one fought FOR me, they fought me, still do. And no way do I want another Spectrum person to go through what I did. I care that much. I certainly care far more than I ever get back. That's the life of a self advocate with no support.

"If you can't make it better, at least don't make it worse. Thanks for your time."
Spence's article appeared in The Mighty, a site about special needs founded by parents with good intentions. It's a site that does incorporate the perspectives of people with disabilities rather than just those of parents of people with disabilities, as in Courtney Barnum's post on Functioning Labels. My hope for The Mighty is that, in the process of learning how to turn good intentions into good resources, its staff also learns that it can only hurt a community to pit its members against each other.

Monday, November 17, 2014

One Autistic Teen's Disneyland Success Story

Shannon Des Roches Rosa

Have you or, if you're a parent, have your kids ever been to a Disney theme park? If so, does it hold you or yours in thrall the way it holds my teenage son?

Leo has been asking to go to Disneyland nearly every day since his last visit 20 months ago, because the Land of Mouse is his very favorite place, largely thanks to its disability accommodations. But after that Happiest Place on Earth changed that disability pass system last year, I balked at going. One of Leo's personal philosophies is Anything Different Is Bad. Really bad. So a different Disneyland experience would be Really Bad. Plus I heard nightmare accounts of vacations gone sour, endless lines, folks having meltdowns, and more (DRtC*). I didn't think Leo deserved to have a rotten experience at a place he considered his personal Wonderland. Best to stay away.

But he kept asking. He kept watching YouTube videos of Star Tours and California Screamin'. And I kept thinking it over. And I started thinking maybe. And I read reassurances from many folks (Moriah, Ellen, Jess) that the system was different and somewhat bumpy but doable. And his generous grandmother had given him and his little sister Mali Disney passes as 2013 Christmas gifts...

And I thought, hey, maybe it could work. Maybe the key to avoiding bumps was not adapting to the new system itself, but going during a low attendance day. So I checked the Disneyland Crowd Forecast calendar for a low attendance day near Leo's birthday. And it said that the day after Veterans Day, which was a Wednesday this year, would be a mellow day.

So we went on the day after Veterans Day. (Leo's big sister Iz and my husband Seymour, sadly, were not able to come with us.) We went for just one day, in case things went kablooey. (Spoiler: things didn't go kablooey. Not once.)

I think Leo had a great time, such a happy time, because we planned carefully. We stayed at the on-site hotel for just one night, so we could have a relatively relaxing drive on the way down, and a relatively relaxing pre-Disneyland afternoon and evening at the hotel pool, at the hotel restaurant, and wandering around the adjacent Downtown Disney shops and restaurants. Leo likes all of those places.

[Image: Leo sitting on a lounge chair,
with a hotel pool in the background]
(Side note: I was still nervous about Leo having a different experience even after we arrived at the hotel, even during a pleasant afternoon in the pool area, so I asked the good folks of the TPGA Facebook Community about their Disneyland experience and advice. They mostly reassured me that we would be fine.)

Staying at the hotel allows for other conveniences: we could leave our car at the hotel overnight, and pick it up right after we left the park -- no waiting in endless post-closing lines for the parking lot shuttles. We could leave our luggage at the hotel as a courtesy the next day, even after we'd checked out. We could buy our tickets for the park as we checked in to the hotel. We could get Happy Birthday pins for Leo and Mali at the same time, because we were there for both of their birthdays.

Leo's Happy Birthday pin meant that everyone, everywhere -- hotel, park, restaurant -- wished him Happy Birthday by name (Mali, who is slowly starting to care what other people think, declined to wear hers). Leo thought constant happy birthday greetings were great. The hotel pianist even changed his tune to Happy Birthday when Leo walked by. (We were en route to the Lounge, where Leo could chill while I had a mai tai, and Mali went and made Lego racers with a local friend at the Lego shop.) I thought the birthday awareness and recognition was a lovely touch.

 [Image: Leo lounging in a fireside chair,
playing on his iPad, with one leg thrown
over the chair's arm. I did say "lounging."]

Another, really important part of staying at one of the three Disney hotels is that you have access to Magic Hour, which means one park per day (it alternates) opens up one hour early for hotel guests only. Even better? They actually open up the gates 15 minutes before Magic Hour. Which means we got to hit the California Adventure Chamber of Commerce and get Leo's Disability Access Pass (DAS) before the park was even officially open. It was great; there was only one other family in line at the Chamber of Commerce when we arrived.

[Image: the line at California Adventure's
Chamber of Commerce: Exactly one
very blonde family.]
Getting the pass was straightforward. They asked me why Leo needed the pass, and over his bouncing and giggling because OMFG Disneyland, I told them his disability meant he had trouble waiting in long lines. They said "No problem," took a picture of Leo, and printed the pass out.

[Image: Disneyland Disability Access Service
Pass. It has Leo's picture, & lists his name,
the date, place issued, & party number.]
We didn't even need the DAS during magic hour. As soon as the park rides opened, we walked over to Soarin' Over California (which Leo loves, and calls "helicopter!"), and waited only 10 minutes. Leo was ecstatic.
[Image: Leo sitting on a bench in Disney's
Grizzly Gulch, next to an empty sidewalk]
We then walked the nearly empty streets over to the California Screamin' roller coaster, which Leo did not enjoy as much as he remembered, and unfortunately (from roller coaster fan Mali's perspective) did not want to re-ride. There was a bit of sadness over that.

[Mali & Leo leaning on a wrought-iron
fence with a roller coaster and a Mickey
ferris wheel in the background. ]
Mali was especially disappointed, because as you can see from the California Screamin' sign below, the wait time during Magic Hour was all of five minutes, and she could have gone many many many times in a row. Alas. Compromises smart sometimes, when one is not yet ten.
[Image: Digital sign, yellow with red/blue text,
with approximate wait time sign for California
Screamin' roller coaster, reading "5" minutes]
Then the park opened to everyone, and the lines for the popular rides got long, and it was time to use the DAS pass. I was nervous, but all the Guest Services cast members administering the DAS pass logistics were friendly and helpful. And using the pass was much less complicated matter than it sounds: go to a kiosk, and tell the person which ride you want to ride (Don't forget to say "please"). The cast member looks up the current wait time, cuts it in half, and writes down the current time + half wait time as the time you can go on the ride. Then they stamp the ride time with their initials. Honestly, the most stressful part of using the pass was locating the Guest Services kiosks.

Once we got to the rides, the pass worked exactly like the previous disability pass did: you go in the accessible or FastPass entrance. Sometimes you have lines, sometimes you don't. And Leo was fine with any the waiting he had to do, because damn, he was at Disneyland!

[Image: DAS pass inside. Guest services folks
write out rides and times by hand, using a
grid and stamped initials. The pass is white
with a green border, and is passport-sized.]
One caveat: the DAS pass logistics will apparently be changing as of this week, though cast members were not able to reveal much, other than that they all had to go to training. They (and by "they" I do not mean the woman pictured below) did say folks were still finding ways to game the system, by getting multiple passes per family, and splitting up to get multiple times, but then having the whole family use all of those times (as opposed to having two different kids who qualified for the DAS pass and wanted to go on different rides at the same time, which would be fine). Commenters at TPGA also mentioned rumors that people were forging ride times. If you look at the pass above -- handwritten with stamped initials -- I allow how easy that could be for a motivated person to falsify.

[Image: Guest services woman writing out
the next ride and time on Leo's DAS pass.]
The only ride we had to wait more than 15 minutes for, even with the DAS pass, was the new Cars ride. Which was absolutely worth the wait. But there was plenty to do while we waited, because it was (say it with me) a low attendance day. So there were plenty of nearby rides that needed no DAS access because the lines were so short. Rides like Leo's beloved twirly ladybugs. In fact, on this low attendance day, most lines were so short that we didn't even need to supplement Leo's DAS pass with Fastpasses, as many folks had recommended.

[Image: Leo seated in a spinning lady bug car.
His official Happy Birthday Leo pin is visible.]

We also used our downtime between DAS rides to have snacks, meals, and pit stops. We sat on more than a few benches to chill with iDevices or snacks, or just rest. Walking around all day is tiring! Breaks are good!

[Image: Mali & Leo lounging on a bench in Hollywood Land]
The cars ride, again: totally worth it. I recommend it. Even though we only went once because of the long wait.

[Image: Leo, Me, & Mali on the Cars ridecam.
Our car is purple, we are in the front seat.]
One ride we did go on three times was Star Tours. Because it is Leo's favorite ride in the entire galaxy. But we did do the DAS wait time every time, and Leo was OK with that because of other rides he liked that had short wait times. Including that ultimate sensory seeker experience, the Spinning Tea Cups.

[Image: Leo wearing 3D glasses next to the Star Tours
loading area. Star Tours uniformed dude in background.]
You know what else made our visit great? Everyone was just so nice. This is the aspect of Disneyland that is actually magic, to me -- accommodation is part of the the culture. The cast members ask what they can do to help, take accommodation requests seriously, and we didn't have a single encounter with WTF face.

[Image: triple selfie. Mali on left, looking over my shoulder,
me in center, Leo smiling on the right. It's a Small World
topiaries and blue canal wall in the background.]
I think we'll be going back next year, and repeating these circumstances as much as we are able**. Not sooner, because the logistics that make these trips work for us are expensive, even with gift cards from Grandma. And going on a low attendance day requires scheduling sleight of hand and will not be possible for everyone, and indeed for us most of the time. But our trip was such a success. We kind of have to go back, because Leo is leaning against me as I type this, giggling at these photos of our trip, and asking, "Disneyland?"


*DRtC = Don't Read the Comments. No, seriously, do NOT.
**Repeating it minus the doing-it-all-in-44 hours time frame. The wham-bam timing was mostly OK, but a solo seven-hour drive after a full day at a theme park is not something I recommend.

Tuesday, November 4, 2014

How ASAN Helped Issy Stapleton Get Justice

Kelli Stapleton was recently sentenced to 10 to 22 years in prison for child abuse, after attempting to kill her autistic teen daughter Issy. We spoke with lawyer Samantha Crane, who is the Autistic Self-Advocacy Network’s Director of Public Policy, about ASAN’s efforts on the Stapleton case: both in helping the prosecution send the message that disability does not justify murder, and in urging the court to ensure Issy saw the same justice as any other victim of felony child abuse.

TPGA: How did ASAN get involved with the Stapleton case?

SC: ASAN generally issues statements after individual incidents of violence that come to our attention, often statements concerning media coverage. But with the Stapleton case, since I’m a lawyer and I started at ASAN one month after the attempt on Issy’s life, we really wanted to see if we could influence the trajectory of the case, not just the media coverage.

So, on the recommendation of one of ASAN’s members — we get a lot of good input from our membership — we reached out to the prosecutor on the Stapleton case. We thanked her for taking the case on, and for taking it very seriously, and for really pushing to make sure Issy got justice. And we offered ourselves as a resource to educate the court and the prosecutor’s office about the issue of violence against people with disabilities by caregivers.

TPGA: And how was your offer received? Were you able to influence the prosecution, and/or the court?

SC: The prosecutor was very friendly and said that our efforts would really help. What we ended up doing was writing a sort of a Sentencing Statement. In criminal cases, at sentencing, there is an opportunity for anyone to submit a statement to the court, on how they feel the judge should sentence the defendant. For example, Issy sister Ainsley sent in a sentencing statement, I believe Issy’s father Matt submitted a sentencing statement, and the prosecution submitted its own statement. And ASAN submitted sort of a third party sentencing statement through the prosecutor’s office.

Our statement, which is up on our website, really goes into a court-friendly argument about how the sentencing needed to be treated the same as any other incident of violence. The court was hearing a lot of messages from the defense, from other witnesses, about how Issy’s disability was so stressful that it should be seen as some sort of mitigating factor. That Kelli Stapleton had been suffering for years with Issy, and that she snapped — exactly the same kind of messaging that we often seen in the media. Which is very dangerous.

We wanted to make sure that the court understood that stress is involved in almost every incident of serious child abuse, but it should not be seen as a mitigating factor more than any other source of stress should be seen as a mitigating factor. By and large, parents of people with disabilities are able to take care of their children without trying to kill them. And in fact the majority of parents of people with disabilities have less access to services than this mother did. She had gotten her child into a residential placement, there were some issues with her school, but she had been getting a whole lot of help — including securing almost continuous care in the home, a level of support far higher than almost anyone else in the state was receiving.

And the court heard from many of Issy’s family members, many of whom contradicted the mother’s description of Issy. They said Issy was fine with other family members and care workers. Kelli tweeted that aides had offered her tips on how to manage Issy’s behaviors in a way that wouldn’t cause meltdowns, and she rejected their advice. And parents sometimes do know their children better than care workers, I’m not saying whose advice was correct. But it certainly wasn’t the case that Kelli Stapleton didn’t have help.

The final goal for our witness statement is to just keep the focus on Issy, and make sure the judge understands that the case is about Issy, about something that happened to her. Issy understands enough about what’s going on around her that it’s really going to be very dangerous to her — and to many other people with disabilities — if the court sends the message that we should just expect abuse. That her disability is so severe that she should just expect to be abused by those around her because they are so stressed out. And that’s basically what it would mean if the court were to say that the abuse simply was a natural result of caring for a person with a disability.

We kept in touch with the prosecutor, and that really helped us develop our opinion of how the sentencing decision went. The prosecutor, unlike us, was present in the courtroom when the judge announced the verdict, and was able to tell us that the judge was really focused on treating this incident the same way as any other incident of child abuse. The court didn’t really mention anything about Issy’s disability making the woman’s life harder.

TPGA: We often have to counter misleading messages about cases like Issy’s, messages implying or stating outright that abuse (or worse) happens because “parents just need more support” — which was certainly not the situation here. What did the court have to say on this matter?

SC: The judge did acknowledge that Kelli Stapleton was in need of help — for emotional problems, not in terms of needing help caring for Issy. She was having personal difficulties in the time leading up to the attempted murder. But she wasn’t in need of intervention in managing Issy’s behavior — she was in need of intervention in managing her own behavior. And the judge did take that into account, but very fortunately kept the focus off of Issy, and off of this argument that Issy’s disability was somehow the cause of the mother’s act of abuse.

Kelli clearly had a history of responding to stress by lashing out at others, mainly Issy, but she had been making statements about her frustration and clearly terrible relationship with her daughter, for a long time. We don’t take the position that there wasn’t anything that couldn’t have been done. But the intervention that needed to be done was someone noticing that this person was expressing persistent hostility towards her daughter, and noting that maybe that might be a dangerous situation, and intervening.

TPGA: Are there interventions that, in your opinion, might have helped?

SC: What we need is for social workers and other such officials to be able to try and intervene in cases of violence in families, including in ways that are short of removal. It’s possible that social workers weren’t observing anything in the Stapleton case that in itself merited removal, but should have been ringing warning bells. They could have started intervening in less dramatic ways — started by offering counseling to the parents, and respite services, depending on what is available in Michigan. But people needed to be aware that this was an at-risk family because of Kelli's attitude towards Issy.

TPGA: Were there any indications as to how Issy is doing?

SC: Issy was in a coma for days. She has permanent traumatic brain damage. The brain damage very luckily has not affected her communication skills, but she has mobility and coordination problems that are greater than what she had before. And she’s going to have to live the rest of her life knowing that her mother tried to kill her.

We have members of ASAN whom I know personally, whose parents tried to kill them, or who acted extremely violently towards them. Fortunately that’s not an experience I had personally, but being able to hear people talk about what that was like for them is an important part of developing awareness that acts like this have real consequences.

TPGA: Was ASAN satisfied by Kelli’s sentence of 10 to 22 years?

SC: A lot of people were calling for life in prison, and I certainly wouldn’t have objected; I feel like if any act deserves life in prison, attempting to murder your child would be one of those things. The reason we believe Kelli Stapleton’s sentence is a significant penalty, and not a slap on the wrist, is that the sentence is in line with those we would typically see for a similar crime, for other people in that same situation but where disability wasn’t a factor.

It is never acceptable to hold a child’s life hostage in the demand for more services. There are many things that we as a society can do to prevent these kinds of acts of violence. But those things need to be focused on preventing abuse, communicating that every person’s life is valuable, and detecting the warning signs of possible violence ahead of time, and really providing targeted anti-violence services rather than simply giving the parents more support in whatever therapy they want for their child and hoping that that will somehow improve the parent-child relationship. If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.

This is really the first time ASAN has been directly involved in the advocacy around a particular prosecution. We’ve been challenging media narratives, we’ve been blogging, we’ve been issuing our own statements — but now we’re really coming into our own. We’re really able to participate in the actual process, and influence the people who are making important decisions about sentencing, about the kinds of services that need to be given, about the kinds of defenses that are acceptable, and about the kinds of defenses that are going to be recognized as straightforwardly anti-disability. We’re really, for the first time, able to have a direct impact on that.