Guest Post: Morénike Onaiwu on Why the Autistic PoC Anthology is Important

Today I’ve invited Morénike Onaiwu to write about the importance of the Autism and Race Anthology that Autism Women’s Network is fundraising to put out with Lydia Brown (aka Autistic Hoya.) While I do find the anthology incredibly important myself and could sit here and type up a ton about representation, I feel that it is important to carry the principles that having an anthology about Autistic PoC be written by Autistic PoC exemplifies into how I help promote it. So aside from signal booting about it on my social media, I’m pleased to welcome Morénike to be the first guest post ever on this blog. 


 

A family shot of a woman with two young children sitting piled together on an indoor hammock.

Morénike and her two children.

 

Though I was obviously “born this way,” on paper, I’ve only been “officially” Autistic for under a year. What now seem to me like obvious signs of being on the spectrum were always explained away as “something else.” For adult Autistic women, such experiences are not uncommon. However, I strongly believe that it is not just my gender that contributed to my being “missed” for over three decades. I am certain it is at least partially due to my color as well. You see, I am a black woman – and growing up, autism simply didn’t “look” like me.

My name is Morénike, and I am a board member of the Autism Women’s Network (AWN) as well as an Autistic advocate and parent (of Autistic and non-Autistic children). I’m honored to appear as a guest blogger today to post about a topic that’s very important to me – and that I believe should be important to you. Though I am somewhat of a newbie to Autistic advocacy, my interest and commitment are sincere. But regardless of who I am, this issue is one that I hope you will be willing to lend your support to.

There is a quite a bit more understanding of autism in 2014 than there was in the ’80’s when I was a child. However, one thing that hasn’t changed much is that neither the public “face” not “voice” of autism is reflective of the diversity of Autistic people, whom do not all have the same skin tone as Temple Grandin or the child actor from “Parenthood.” Autistics of all hues are working to increase the solidarity of various groups within our community and to amplify the voices of those of us who are less represented, so things are gradually improving. But change takes time. In the large, multicultural city where I live, I can still easily pick my two Autistic children out in a crowd when we attend local autism events; clearly there’s still much more to be done.

Fortunately, an exciting Autism Women’s Network (AWN) project is underway that will highlight the voices of Autistic people of color. Edited by another AWN board member, Lydia Brown (a talented Autistic writer and blogger), the project – an Autism and Race Anthology – will fill a much-needed void and will help to make the discourse surrounding autism more inclusive of racialized individuals. I cannot emphasize enough how significant this project is. However, to make this anthology a reality, we need help!!! YOUR help. Here’s how you can make this anthology a reality:

  • Signal boost this project. Tweet about it! Post about it on your blogs, on tumblr, on Facebook, on other social media venues. We need to spread the word far and wide.
  • Donate. A little money can go a long way. AWN is committed to making the anthology accessible, so it will need to be created in various types of media formats. To do this, funds are required. Only about a third of the money that is needed has been raised. We really need more! Please donate, and also share widely to encourage those that you know to also help with a donation!
  • Submit! We heavily encourage any person of color who identifies as Autistic to contribute to the anthology. Submissions are being accepted from now through the month of November, and acceptable formats include poetry, narrative, and more.

Please visit the link below to get more detailed information about the anthology and how you can help. Thank you!

Donate via the Autism and Race IndieGoGo.

Check out the submission guidelines for the anthology and consider submitting.

Initial Thoughts on John Scalzi’s “Lock In” (Spoilers)

I just finished John Scalzi’s Lock In, and I have an array of thoughts. I’ve decided to post it here instead of my (poor, under used) book tumblr for two reasons: 1) it is a very disability centric work and 2) a lot of my reflections on it are not just disability centric, but also neurodiversity related. NOTE: There will be spoilers in this post. If you wish to avoid spoilers, skip the read more/reading past the warning.

I really enjoy Scalzi’s work generally. It’s far from perfect, of course, but generally speaking he tries pretty hard to do good. In the past he’s done things like announce that he will not make appearances at fan conventions that do not have a strong anti-harassment policy, signal boosted and backed up via giving them guest posts on his popular blog when friends have reported sexual harassment, and talks bluntly about discrimination. Sure, he has flaws both structural and personal, but he has grown greatly over the years.

His writing is also, in the general rather than disability sense, pretty accessible on a whole for his genre. I have Audio books of his Old Man’s War universe of books, and Old Man’s War in particular is one of those books that I’d rec to someone who isn’t super familiar with but willing to get into reading Science Fiction. (Trust me when I say that Science Fiction is a genre with a LOT of not terribly accessible writing.)

the Cover of John Scalzi's "Lock In" featuring plastic figurines of people. most are a pale white color. but a few are bright red. The author's name and title are in the center.

Cover Image via John Scalzi and TOR

The basic premise involves a bit of background, and summarizing it here is going to make it sound more complicated than it feels in the novel. In the universe of Lock In, a flu like epidemic strikes. At first it sees like any epidemic flu- high mortality rate, sure, but normal- until the second stage sets in: meningitis. And not just any meningitis- this one will put you in a coma and a certain percentage will wake up with their brain re-wired. Sometimes it’s minor, but for a decent chunk of the population they wake up to a form of Lock In Syndrome- their brains have changed so much that even though they are awake and conscious, they no longer have control of their bodies.  Other survivors of the second stage of the illness, those with less extensive brain changes, have the ability via technological enhancement to allow the consciousness of those who are locked in to “borrow” their bodies. They are called Integrators.

After FLOTUS  Haden contracts the locked in form, a ton of legislative dollars got dumped into a fund that would cover both care and treatment as well as quality of living research areas and the illness is named “Haden’s” after her last name. Neural nets are developed to  allow those locked in access to a digital world. At some point an engineer develops robots (Threeps) that can be “ridden” by those locked in, and they are once again able to access the outside world.

The book takes place 20 years later. While there’s some bigotry towards Hadens, there has been a lot of pretty darn effective accommodations via the epic assistive device of the Threeps. Thanks to that, Hadens can do just about any job anyone able bodied could do- and some that they cannot. Additionally, the digital world of the Agora has allowed for the development of a Haden’s culture of its own, complete with identity-first language usage, and some younger folks end up rarely using a Threep preferring the online world and jobs that they are able to do from there. (In this universe, I’d be able to continue my social media contracting work even if I were a Haden.)  Unfortunately, this also means that there are fiscal conservatives who want to cut nearly all money for Haden’s research, support, and development- and they do nearly just that. As the book starts there is about a week until the defunding legislation (The Abrams-Kettering Act) goes into effect.

Into this setting we follow Chris Shane, a new FBI agent- who happens to also be a PoC Haden- as his first week on the job kicks off with what looks like a murder. His new partner, Leslie Vann, is a former integrator and together they work in a special department that handles cases involving Hadens and Integrators. (For procedural purposes, any crime involving a Hadens or an on duty Integrator are considered inter-state, since the body of a Hadens could be anywhere while the Threep comits/is involved in crime. Ditto for an on duty Integrator.) The murder ends up becoming something much more, and we are treated to a pretty good tale that is something between corporate and procedural thriller. In the end I really really enjoyed it, but for me personally I had a hard time with some aspects up until the final few chapters. However, I will say that I already want to read it again just in the time that it’s taking me to write this post. I hope that Scalzi writes more in this universe, if only a short story set immediately afterwards- I want to know what was being said in those speeches!

You can read the first five chapters of Lock In on TOR’s Website. You can read a long short story that goes into details about the background in an interview narrative style on TOR’s website. It is called “Unlocked” and stylistically reminded me of the book World War Z. You can of course purchase it on Amazon, but please consider purchasing from a local book dealer or independent retailer- see details at the very end of the post. 

From here out there are spoilers, read at your own risk. Continue reading

Public Comments on PA’s Transition Plan for CMS’s Final Rule on HCBS

The Centers for Medicare & Medicaid Services released some new rules on what constitutes Home and Community Based Services/Supports (HCBS) early this year. I was personally quite pleased about the progress the rules represented. You can get a decent overview via slides on the HCBS Final Rule on CMS’s website. They have a page on Medicaid and HCBS where you can get additional information about the rules and so forth, including the text of the rules themselves.

Each state has to develop a transition plan that shows how they are going to approach making their state’s service system fall in line with these rules. Right now Pennsylvania’s is in a comment period. There are likely better people to go into the details about PA’s transition plan- my basic feel for them was that it could definitely have been more extensive, and I was disappointed that the person centered aspects were pushed to a different transition plan for sometime in the future.

As part of the process for the transition plan involves public comment. The final public hearing session, in Harrisburg, is the afternoon of the publish date on this post. However, you can still submit comments until September 16th, 2014 via mail or email. (Details on how to submit a comment on this issue.)

To speak at the public hearings, you had to register that you wanted to submit comments. I registered and attended the Pittsburgh session. At the beginning, the staff running it went over the bare basics of what the rules were and said that they had moved the person centered aspects to a different plan because CMS had some stricter processes for that aspect of the rule. Which meant that the big points that I was interested in emphasizing, and many of the others were interested in addressing, were less on topic than we expected, because that point was not clear in the registration for the hearings. Each person was assigned 5 minutes to speak, and there was live transcription. Speakers were expected to also mail or email their comments.

against a wall, two things are projected: one a power point with a count down on it and the other live transcription.

Live transcription at the public hearing…

I had decided to basically remind everyone about the Keeping the Promise paper (link below)  and the fact that it heavily influenced CMS’s final rule, but to focus on an experience from the interview process that I felt would highlight some of the difficulties that need addressed in order to make sure this actually changes people’s lives and experience of community. You can read my comments below, with a couple of edits in square brackets to make it make more sense here. And don’t forget to submit comments of your own!


Hello, my name is Savannah Logsdon-Breakstone, and I’m an Autistic adult from Venango County. I wanted to remind you all about a paper called Keeping the Promise which informed the rules on HCBS that CMS released. This paper was based on interviews with a wide range of self advocates from around the country, including some from Pennsylvania, conducted by a team of primarily self advocates with the help of some allies.

I was a part of creating that paper as someone who conducted interviews and gave some input and I have to say when the rules came out I was pleasantly surprised- some of the recommendations we gave were not only followed, but some of the language lifted word by word. This was important, as the recommendations from that paper were ones that came from both the lived experiences and the dreams of self advocates thinking about what community living should look like for themselves.

My experience interviewing self advocates for this paper also highlighted something even beyond the paper itself for me though that I believe could contribute to addressing our state’s writing of and effective implementation of the new regulations. Specifically I want to give you a concrete example.

While I was interviewing people, I met an older woman with ID and some mobility issues. By most standards she was well supported, and her staff engaged about her access to community both on local and national levels. We had been given a fairly basic set of questions asking what community was and wasn’t and what those we were interviewing wanted in their lives, all in plain language. I sat down with this woman and her staff and was writing down her responses as she was unable to write them down herself, and she gave pretty straight forward responses, usually not terribly long and sometimes her staff would ask her to elaborate on something she said.

I don’t remember what question specifically it was, but at one point she said to me and to her staff that she wanted to live in an apartment with maybe one friend. The staff exclaimed that this was the first time she’d heard this, and when asked if she had been thinking about this for a long time, the woman said yes. She had been in the same group home, which was a little on the large side, for 20 years. For a decent chunk of that time, she wanted something else for her life, but no one had been asking the right questions of her in a way that was accessible to her and given her time to think and answer and be listened to.

Being there when she was able to express her wishes was an honor, but it had me thinking. This was a woman who by all outward observations was well supported to engage in self advocacy. And yet she had not been having her own planning team ask her in a way she could respond to and understand what she wanted in her life. And it was all very simple basics- nothing elaborate or super detailed or hard to do.

This experience illustrated to me and I hope illustrates to you that having a truly person centered, community based plan is about more than a check list and outside observations. It is about making sure our supports coordinators, our support staff, and our entire teams are truly coming in with the intent to make the person the one making the big decisions about what their life should look like, and following through by making sure their questions are asked accessibly and understood and a that the responses the person makes are truly listened to in whatever form they come. It might take extra time, but it is important.

I have printed out a copy of the Keeping the Promise paper for [the staff administering the   and have emailed both my comments and the paper to the email provided for the purpose [the day of the hearing]. If anyone else wants to read the paper it can be found [on the Administration for community Living's website as a PDF: Keeping the Promise].

Thank you.

I’m not a side story

… But going by the stories out there, you’d never know it.

A few months ago, I had a dream. There was buddies and lovers and hijinx and fabulous clothes and lots of fun. Sounds like a pretty cool dream, right? Except when I woke up, I realized it was a nightmare.  For having seen all these fabulous things happening in my dream, when I woke up I came to the realization that it was not my narrative arc that the dream was following. I was a side character in it- a part so small I barely had a name in it, a character so minor that even in a romance novel series that pairs a couple up per book, my character wouldn’t have a book. I was the character who existed only in order to give reactions to the actions of the character the narrative followed, more object than person, more context than character. When I woke up, I sobbed silently into my pillow for more than an hour in the pre-dawn morning.

The framework this nightmare was built on didn’t blossom up from my mind alone. It grew out of a lifetime of the media we, as a society, consume seeding itself there. Very rarely are stories- particularly love stories- the stories of disabled folks living their lives. Too often when they are, they become pity fests, or the disabled love interest exists primarily to teach the non-disabled love interest a lesson about life. (And primarily these are still white, hetrosexual relationships.)

Living without seeing your reflection in media is hard. Trying to picture what it would be like to marry, or parent, when there’s so little media to help us think about those things realistically is hard. It’s soul crushing. And it permeates past your conscious efforts, right into what’s inside of you. Eventually, hopes that look pretty normal seem like fantasy. You stop being able to picture yourself doing the things that you hoped for, which makes working towards them that much harder.

And it’s not like it’s easy to begin with. Beyond just the difficulty of life in general, when you are a person with a disability there are additional factors.

There’s a moment in your life when you are disabled- or trans, or queer, or a PoC or…- when you realize that in most of the media you consume the people who do actually seem like you aren’t there to be fully realized characters. You are the comic relief, or an instrument of change. You are the reason that the “real” characters learn to grow up, or take their first stand against an enemy. You aren’t the protagonist yourself.

When the story is over, the characters like you go unremarked or are carefully wrapped up and put back where they “belong.” This goes for Rain Man as much as for the recent Bones episode “Heiress on the Hill”- while they deal with different disabilities and were made more than two decades apart, both end with the surprise brother going back to the “nice” private institution where it is said that they “belong.” That Bones decided to do this, more than two decades and the Olmsted decision since Rain Man, broke my heart. I stuck with the show, but now… I’m too disgusted to go back. There are less restrictive settings for people with that level of MH support needs. I would know- I’ve helped write policy about them. And even if there weren’t, we could have seen Bones and Booth put money towards FUNDING the development of less restrictive settings instead of how it went down. I feel betrayed. I started watching the show because there weren’t many women like Bones on TV, women with a lot of autistic traits who uses her special interest to understand the world, and now… I can’t.

I’m not the only person who has talked about this, about finding characters who are like you, who move like you, who live like you. Who have talked about the first time they met themselves in literature or film. It can be empowering, and it can also be harrowing- empowering because representation matters, harrowing because too often it’s sterotypes, because when we grow up and look back we realize our relief clouded things, because it’s so hard to find.

*When I read Rainbow Rowell’s Fangirl, there was one thing that really suck with me about it, and that was the protagonist’s father. Too often, parents with mental health disabilities are displayed as incompetent at best, often pitiable and where not as villain. But here I felt like he was considered a good father by the protagonist- a man who might make some mistakes, yes, and one whose MHD impacts his life a lot, yes. But in the end he is a good father, and a good man. This was very powerful to me- when I was younger, I figured perhaps it would be best if I didn’t have children. I’d only seen bad things happen in the stories I saw or read about parents with MHDs, and assumed that it would be horrible for my kids. That the pattern I had at that time of going to the hospital every 2 years for a stay would stretch out forever, that my kids would end up bouncing in between me and my mother forever. I thought I should plan hard enough to not want kids, and tried to squash down any desire to.

*And then my niece was born, and I realized that I really do want to be a parent some day. Because of physical health issues there’s a chance I’ll need extra help to become a parent, but it is something I want. And it’s funny- I haven’t been in the hospital for MH stuff since before then, and she’s 5, and will be 6 in the fall. Along the way I had begun uprooting the ableism that was embedded in me, and continue to do so. So finally seeing a positive yet realistic depiction of someone with an MHD (aka Serious Mental Illness or SMI) being a loved parent- even if he’s one that needs help sometimes- was very affirmative for me.

*There’s still that his story was a side story, yes, and it wasn’t exactly a life full of romantic relationships for him. Which is why I want to talk about The Fault in Our Stars super quickly. (I know some people hate the author, but I don’t so I ask that you keep author critiques on your own pages thanks!) It’s a book that treats people whose lives are often seen as tragic and cut too short as being full people. That their lives are or are likely to be short doesn’t make their lives less meaningful or valuable or worth living. It doesn’t prevent them from having complex thoughts and feelings about their lives. And it doesn’t prevent them from falling in love and *gasp* having romantic relationships that include being sexual. That was really powerful for me, as it was for a lot of other people.

Atop a pile of boxed up books is a red sign with blue-ish text reading, "We need diverse books because without them, I have trouble being the protagonist of my own dreams." With sheep turning into "Zs" around it are a cane, a Fluttershy plushie, and a Dora doll

This week, there’s an effort called #WeNeedDiverseBooks going on. May 1st, they are putting out submitted pictures (mine is above) talking about why it’s important that marginalized people are represented in literature, especially in children’s and young adult books. May 2nd, there will be a twitter chat at 2pm under the hashtag #WeNeedDiverseBooks- though the tag has been active since at least April 28th so feel free to join any time. (I’m @nicocoer.) On May 3rd, there’s going to be an effort to have folks buy, request, and share books about marginalized people and by marginalized authors. (You can find more details in this post.) I encourage you to check it out and to submit to the efforts as well.

It was this effort that helped me finally finish this post after months of working on it. I’m sure I could write more on this. I’m sure I could write more on how impactful it can be. But there’s too much to do that and ever really feel like I’m finished. And it goes, obviously, beyond disability- as many of the others involved in #WeNeedDiverseBooks can and are testifying, there’s too few representations of PoC, of people who don’t fall in the peak of the size bell curve, of people whose faith is not Christian (in the USA at least), or of a wide range of other folks. And what representations there are too often suffer from the same, similar, or analogous issues to those described above.

And none of us- none of us, period- should see ourselves as sidekicks of our own stories.

______

It’s also, coincidentally, Blogging Against Disablism Day on May 1st. Please go forth and check out the other posts being entered.

*Edited in. Forgot I hadn’t written it yet, oops. ~Bad Brains Princess at work~!

 

Cracked Mirror in Shalott Expressions of PosAutivity: #AutismPositivity2014

I’m going to try to be really quick about my #AutismPositivity2014 post because I still need to finalize a poetry submission for Barking Sycamores- a poetry journal by and for neurodivergent writers- caption a couple of wonderful presentations, and finish a post for May 1’s #weneeddiversebooks event on twitter and tumblr. 

This April has been rough. Between the negative messaging the public is getting, news of yet more deaths of PwD at the hands of caregivers, missing persons cases, and hearings on both electric shock adversives (FDA’s #JRCHearing) and police brutality against PwD (Senate hearing live tweeted as #EthansHearing) it’s almost unbearable. In times like this, I think that the effort that #AutismPositivity2014 represents becomes especially needed. It can become very easy to allow all the negativity to metaphorically carry you away, and remembering to stop and look at the positivity can serve as an anchor.

Today I was in a board meeting for a state level self advocacy group. We are talking a lot about what we are doing going forward. Part of that involved chances to let each other “shine” and ended up resulting in some really positive feedback even during some really tense times- we were able to illustrate to people there to support us that while we may all be people with Developmental and/or Intellectual Disabilities that we are all competent leaders. While we’d keep doing what we do even if we didn’t get that affirmation, it would be so much harder- so when we hear it when it’s about something that we decided on and did, it is a moment of positivity and pride.

At the end of last month, I ended up testifying about the importance of Olmsted to my state legislature, specifically about the Keeping the Promise paper. (You can watch the whole hearing by scrolling to the hearing from 3/31/14- I plan on creating a cut that is just the self advocate testimony later but for now…) There were some hard things about this of course- I had to fit a 20 page document into about 5 minutes, they had me in the same panel as a gentleman who was vocally against community living, and the capitol building can be sensory hell. But it was still a moment of positivity. While I had the anti-community living guy on one side, on the other I had two gentlemen who used to live in a state center (read: DD institution) talk about how their lives have improved since moving to the community.  I had the chance afterwards to listen to a lot of other people passionate about some of the same things I am.

And for all the sensory hell involved, my state capitol is beautiful to look at, and I could spend hours looking at the architectural history… if it had been empty. If it had been warmer, I might have gone out to the fountain and watched the water. That instead I crept back a hall way into the more modern areas of the building where the acoustics are better wasn’t a horrible decision though- I had the chance to see how the building had been made more accessible without sacrificing the essential historical nature. (I will note: if you use a chair and are visiting, call ahead of time. While the business areas are fairly accessible, they have a history of shutting down certain elevators if there are too many chair users lobbying or protesting as a stalling tactic. Shame on them.)

There are little essential joys through all of these- and some of those I only have as much access to because of being autistic. Sure, all of these can be experienced to some extent by anyone. But there’s a particular essence to autistic joy that I can’t really explain. There’s also the sense of working with other people with disabilities that is important to have access to- the solidarity and interdependence when done right is just beautiful, especially in the face of hard things. Being autistic has been an anchor in it all.  I know this might not be your typical #AutismPositivity2014 post, but it is true, and it is what I have for you at this particular time and place.

six different colored hands against 6 different colored backgrounds. In front, the words Autism Positivity Flashblog 2014

To Raise Up An Advocate

In the fall, I attended an all-grantees meeting in Harrisburg, PA. I was there as a board member of Self Advocates United as 1, a disability self advocacy group which centers people with intellectual and/or developmental disabilities. Every one of our board members has a developmental and/or intellectual disability. I do other work with the group, but my purpose that weekend was in my role as a board member. I wasn’t well for about half the meeting, but towards the end I was approached by the woman who administers our grant. She asked me a question that I’m finally well enough to answer: how do we keep bringing in new youth? Did I have any unique ideas?

I told her I didn’t know if I had any unique ideas about bringing in youth with intellectual and developmental disabilities right now. There is a lot of organizing out there around youth issues, and I didn’t have anything especially new to add beyond referrals. But they aren’t really enough. Unfortunately many youth with these disabilities end up having either not been taught the skills involved at a young age, have overprotective and fearful parents/guardians hesitant to support their full participation, or parents that cling to the idea that their child or young adult isn’t able to do the level of self advocacy involved and that they must be their child’s voice forever. These are all really not the best outcomes when we want specifically youth voice from this population.

I did, however, tell her a little bit about what I thought could change this in the future. Here are some things that I think that we, as communities, systems, and as advocates, can do to make sure there are well supported youth advocates with intellectual and developmental disabilities in the future. Most of them are things that my own mother did for me, even when other people told her it was pointless. Some are things I’ve learned through observation of both self advocates and from parents. Either way, my experiences lead me to believe that these steps will  help.

We need to start telling parents when they first start out that it is possible for their child to become advocates. That even if they need extensive supports for the rest of their lives, advocacy is something that is important. It’s important in a personal context especially when you rely on others for your support. I’ve met few parents of kids and young adults with disabilities who haven’t worried what will happen when they are no longer the ones providing support. One of the ways to help mitigate the risks we have as a vulnerable population is to teach your child, starting young, how to advocate for themselves. Needing help understanding complex things, not speaking, or having extremely limited mobility don’t make it impossible to learn these things. Needing to learn it over and over again, or taking a very long time to learn them, doesn’t mean that they can’t and shouldn’t work on learning these skills. Self-advocacy is a survival skill. And a lot of the pieces that we learn in self advocacy can be used or built on in doing broader advocacy. 

We need to start teaching the foundations of these skills young. Let’s be honest- it takes a lot of people with disabilities like mine or like those of my fellow board members to learn things. Some of us need steps broken down a lot more, while others will just need taught the same steps over and over again, possibly for years. All of that is okay. It’s okay to take longer to learn things. What’s not okay is the emphasis too many people are taught on compliance based training- teaching skills that teach one to be more compliant and to eventually become an easier client to handle.

There are some other posts out there that can tell you about the effects of this kind of training and why it’s dangerous. I want to talk real quick instead about how this is contradictory to teaching advocacy, let alone self advocacy, skills. Compliance training, when it comes down to it, teaches you that the wants of other people are more important than what you feel you need- either to survive or to do your best. It also includes prioritizing the perceptions of others over your own lived reality- that other people are the authority on what you should do and what your life should look like so you should just sit down and shut up. You are taught to deprioritize your needs and your autonomy, starting with minor things and lead up to larger things like, say, if you are okay living in such and such facility instead of another setting, or working for peanuts. Additionally, your motivation to seek out alternatives is squashed, meaning that what ability to come up with your own solutions- which some of us might need support with to begin with- you have is made to stagnant. You end up being trained to be a better client, to be less “inconvenient” for those around you. You make yourself small.

ALL of these things are pretty much the opposite of self advocacy and advocacy skills. While we should be taught to consider others, it should be in making our own plans about our lives and how we can incorporate or work with the needs of those around us. It should be by trying to figure out how their experiences fit with ours rather than a substitution. And above all, learning to identify and come up with solutions to problems (and learning when we need help doing so) is something that can’t be taught effectively when compliance training is on the menu- and is one of the longer term skills that we need to eventually learn to be effective advocates. While some of us will always need extensive help doing these things, I fully believe that it is worth it.

We need to create situations of controlled risk- situations that are safe, but that allow both young people and our parents to experience risk and adjust to it. Risk is a part of being alive, of making our own choices. But there’s risk being taken even if we aren’t the ones making the decisions- it just somehow becomes more scary for parents when their children are the ones doing it. Slowly increasing the amount of risk we allow our kids according to what is safe is something all parents face. Acting as though those frightening parts of parenting- and yes, I understand that it is frightening!- don’t apply because your child will need supports the rest of their lives is not okay. By preventing (controlled) risk, you hamper the ability to learn how decision making works, as well as the realities of having consequences of our decisions. This doesn’t mean you do nothing to protect your child! It means that you need to be weighing from the beginning what the risks might be, and modeling the process of deciding what an acceptable risk is. It might start out with something very small, like the natural consequences of eating candy before dinner, and it might take a long time. But without there being any risk- even risk that you might be able to mitigate- we can’t really say that someone is making a real choice. Even if your child never gets beyond controlled and mitigated risk, it’s important to take that step and learn what both positive and negative consequences are and how to deal with them. You will end up feeling better about the decisions your child makes as an adult, and your child will have had the chance to become better at making those decisions.

We need to teach parents that part of their role is learning to switch from advocating for their children to either advocating with or supporting the advocacy of their children. When your child is young, you will indeed need to advocate for your child. Sometimes this part of being a parent lasts longer than others. But at some point you need to expect to switch to having your child become the advocate. Yes, there will absolutely be times that you will have to support your child, even extensively. Yes, there will be people who will not listen unless you, the parent that they perceive as “able,” repeat it. Yes, if your child has a very difficult to understand communication style you might have to act as or teach another person to act as an interpreter for the uninitiated. (My colleague Debbie and her daughter Amber- also a colleague- deal with this a lot when Amber does policy advocacy!) Yes, depending on your child there may be issues that have additional levels of complexity that they can’t quite get their heads around. But all of these challenges are why we need you to support our efforts, and to work with us.

Our opinions and perspectives are important when we talk about our lives. As your children become adults, we need you to understand that the work is not mainly about you- it’s about us, the young people with disabilities. You are our allies, not self advocates yourself, and we need you to respect that that is your role. It can be hard to hear that, or so I have been told by a lot of parents in a lot of different ways. But we want you on board. We want your support, your blessing, and, yes, your love. Though we will try to fight on without those things, we do want them from you- and as we go forward we, and the projects we tackle together, will flourish from it.

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Negligence and Why Wandering is Low on my List

Today it was announced that DNA results on the remains found this past weekend confirmed they were those of 14-year-old Avonte Oquendo. Avonte, a black, non-speaking Autistic young man, wandered out of his school back in October, launching a massive search. That it comes to an end in this way is distressing, but as the months moved on and the area was blasted with freezing weather seemed more and more inevitable. It is, indeed, a tragedy.

I do hope that you heard about Avonte back when he went missing. I hope you reblogged his image around. I hope you talked about the negligence of his school. Unfortunately, I’ve heard a lot of talk over the past few months calling it a failure of inclusive education, or his wandering out and not coming back an inevitable tragedy. It is neither of those things- and was most certainly not inevitable.

Avonte attended a public school. He was supposed to have a one-on-one staffer, and his school had a security officer. And yet he left- and not out of the front door. He was seen by the Security Officer, but was not kept from leaving the building. Reportedly, the officer asked him where he was going and instead of following him, did nothing after he turned to look at them. The Security officer didn’t immediately go to report that a student had left the building. He didn’t have a note, he didn’t have someone to sign him out of school, there was no reason for the officer to not report to the office immediately. As far as any reports go, the door he left out of wasn’t even alarmed. The school neglected to let the parents know, let alone the cops, for a hour after he left. None of the safety protocols the school is supposed to follow were followed.

These circumstances should worry any parent, regardless of if their child has a disability or not. In Avonte’s case, yes, his motivation was likely one that is often categorized as wandering, and yes he’s someone who is more vulnerable to predation than the average kid his age,  but it doesn’t take wandering for a child to go missing. Children and teens might leave (especially at that age) to “skip,” or to engage in more appealing activities. They might be involved in other activities that aren’t appropriate for minors; they might be coerced by others to come with them. Whatever the reason, the vast majority of the steps that were supposed to protect Avonte (with the exception of the one-on-one) were supposed to protect the other kids as well.

There’s a reason, as much of a bummer as it seemed at the time, you needed a note to leave for a doctor’s appointment or what have you. There’s a reason the school nurse didn’t let you just go home when you were sick until they heard from your parents. These measures exist to keep us safe. When they don’t do these things, they aren’t doing their job.  Schools become in a state of loco parentis when you or your child is there- they are expected to protect the well being of the minors in their care. They are supposed to provide for the basic safety of their students. While this status is limited- which is why you needed a permission slip if your teacher wanted you to leave the school campus- it does cover those two charges: safety and well being.

While Avonte’s specific circumstances is an incredibly tragic way to have this school’s negligence revealed, it is a negligence for the safety and well being of every student in that school. What happened afterward may be attributable to his wandering behaviors or not, but it wouldn’t have happened if the school had been following the basic safety policies designed to protect all students.

Avonte’s parents get that, and are suing the NY Department of Education because of the school’s negligence. And here’s the thing- they were going to sue even if he had been found alive and well the first week of his disappearance. That they hadn’t pushed forward on it publicly yet was due entirely to them wanting to find their son first. They had their priorities in order- their son first, then dealing with the negligence that led to this tragedy.

I want us to get that too. I want us to push to make sure that schools are following the safety guidelines they are supposed to. I want schools who need funding to follow these basic guidelines, or to repair damaged equipment, get the appropriate funding. I want us to stand by Avonte’s parents while they take on the neglience of this school- and to make sure that any changes made to amend the basic safety of his school are check out and applied to all students. (I wonder, too, if the safety would have been as poorly monitored in a more affluent area of the city.) And I want us to take time to grieve Avonte, a young teen who was failed and died because of all of this. And Not just as a fellow autistic who has had wandering behaviors- as a human being.