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.

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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.

UN-Healthy PA: Comments on the Current Proposed Medicaid Plan in PA

I’m terrified, and I’m angry. I normally don’t much like to do too much state-specific stuff on this blog, but I’m having a terrible time processing this out and it feels like writing a post here is my only solution. I can’t understand what sort of person would think that the proposed Medicaid expansion plan for PA is a good idea.

It’s not that I’m against expanding Medicaid- I’m a full supporter of allowing access to Medical Assistance (MA) to anyone who needs it. Indeed, I’d be on board with universal access to public healthcare. But that’s not the problem with this. Instead the current proposals undermines rather than enhances the existing system, punishes the unemployed, and threatens the health and well being of vulnerable Pennsylvanians. Vulnerable Pennsylvanians including myself.

Disability Rights Network of Pennsylvania, along with some other organizations, have released calls to action encouraging Pennsylvanians of all sorts to comment on how destructive the current proposal is. (I have posted the text of both of the emails I received from DRNPA on tumblr.) My mother posted about it on facebook with the following comment:

Pennsylvanians! If you receive Disability and are over 21, benefits are going to be cut, mental health is being slashed and there will be caps on services . I do not understand how Governor Corbett can call this “Healthy PA” when our most vulnerable populations are being underserved. If you live in PA, you probably know someone who will be affected. This was slid in around the holidays, so most folks do not know about this. Comment period ends soon, January 13. Speak up before it is too late! And share.

And I? I am terrified. Not immediately, but in that poisonous way that leaves you hyper vigilant, exhausted, and unable to do anything about it for ages. It’s not an unfamiliar sensation to me. I’ve dealt with extended homelessness, abuse, lack of access to health care, and so on in the past. I’ve been in poverty for a large part of my memory. This type of terror is a constant throb in the background that says you can’t afford to be sickyou can’t afford those “necessities,” and don’t speak, if you speak up you’ll lose what you have left. It’s a horrible way to live even if you don’t already have an anxiety disorder; when you do, it makes thinking about the next step nearly impossible.

A lot of people were under the impression, either because our governor lied to us or because they can’t imagine it otherwise, that it wouldn’t impact people either already on Medicaid or on SSI. Yet it does. Coverage  limits will be imposed, “non-emergency” emergency room visits will now have a co-pay, and MAWD will no longer be a thing.

These coverage limits will limit the number of MH related visits you are allowed a year. As someone over 21 on SSI, I would be put on the High-Risk plan. Right now, I don’t quite go over the allowed 40 visits a year because I’m not in mental health crisis, and I’m not at a point where intensive work is being done. But if I were to be in crisis and need to switch over to even one more therapy appointment a month (let alone extra MH med checks that happen in times of crisis) I’d be over the limit. And this is in the more permissive plan. Now, I have decent MH care, but a lot of people don’t. A lot of people are stuck with doctors who are demeaning and dehumanizing, and more than willing to write you up for small things. While this state of things has gotten a little better over time, it’s still an issue- and with a financial reason not to comply, those people who do have bad doctors would have one more reason to just not go.

For me this is more complicated- if I were having to discontinue my MH treatments, I could lose my housing without a ton of work on the part of both my health proxy and my case manager. I currently have a special housing voucher for people with MH needs who have experienced a certain threshold of homelessness. In order to keep it there’s a number of stipulations, one of which is that I must continue MH treatment and comply to it. (Which is a reason to be especially picky about who those providers are, as reports that I’m non-compliant can get me in trouble.) Not coming to the number of appointments that are deemed needed by the professional can be seen as non-compliance. If I had a different psychiatrist, refusing to take a medication because I want to try a different one or categorically disagree with the type of medication could be written up as in violation.

Heaven forbid under this proposed plan my mobility issues get to the point where I need to deal with the paperwork to get a proper wheelchair. (Right now I use one only in settings where I’d otherwise need to stand for extended periods of time, and I use an inherited hospital style chair that isn’t really designed for you to wheel yourself around safely.) The combined annual limit on my “high risk” plan for medical supplies and durable medical equipment is only $2500 under the new law. If I were a full time AAC user in addition to the current restrictions and complications to get a decent replacement device, I or my health proxy would have to try and predict if any of my other equipment would need replaced. If I required, as some of the people I’ve met in my peer education and advocacy work do, a more complex system that also needed accessories like those for mounting to a wheelchair, I could be in trouble- some of the more complex devices might even exceed that yearly cap.

Currently, I have to get fairly regular lab work to maintain my health, find appropriate treatments, and monitor those treatments I’ve already settled into. But the new system would limit the amount of lab work I’d be allowed each year- and my health conditions aren’t even on the highly complex end of lab work requirements. Additionally if I had to get more than 4 out patient “surgeries” a year- which include things you might not always think of as such like the colonoscopy and endoscopy I had to have this fall- I’d be in a lot of trouble.

What truly counts as emergency visits to the emergency room? Would my severely dehydrated and unable to call anyone but 911 for help  because I was on a tract phone visit a few years ago count? I probably would have lived a few more days. What about being in so much pain I was delirious but was sent away with antibiotics and an inaccurate diagnosis? Or when I had an abscess that my dentist later said was severe but the ER said was only a cavity, even though I came in screaming and couldn’t wait any longer? And I’m someone who has access to both a primary care provider I trust and can usually get in to in a reasonable amount of time, as well as access to specialists. What if I lived somewhere where my doctor was over booked and couldn’t take short term appointments? What if I didn’t have any place that urgent but non-emergency care could be provided that I could get to? What if I couldn’t get anyplace further than the hospital? If I lived in a county where there was no one to visit but the hospital for certain things? PA, for all that we show off our beautiful capitol, the bridges of Pittsburgh, or the sprawl of Philly, is mostly a rural state. Pennsylvania has more individuals living in rural areas than any other state in the US. From where I live I regularly have a 5+ hour drive to visit Harrisburg, and to see my psychiatrist (who is a specialist in my diagnostic combination) it is about 2 hours. It isn’t always as easy as identifying the right doctor on your own, if you can even do that. Transportation in our state is kind of appalling.

And that doesn’t even factor in the fact that we’ve lived in a culture where the poor are taught that anything BUT going to the ER is a luxury, and in some cases even that is out of reach. Many hospitals will still treat you so that you are “stabilized” even if you can’t afford treatment, either billing you later or making you apply for grants to cover your treatment. (And some of those can remove your treatment options- read your paperwork.) For a while now, the ER has been a treatment hub for the poor, and that doesn’t change by punishing the poor. I can kind of understand limiting ER visits in the long run, but before that we need to enact cultural changes that won’t happen until the poor have an alternative.

MAWD is Medical Assistance for Workers with Disabilities. MAWD lets people with disabilities earn enough money to support themselves, or at least work towards that point, without losing your medical benefits. This is a big deal- if you are on SSI or SSDI there’s a cap on how much money you can earn without losing everything. For some people the only reason they can work is because of the level of medical care and supports that come with being an SSI Medicaid recipient. Trust me, the image of an SSI recipient being lazy is usually a myth. Most of us want to work as we can, even if it’s only a few hours a week and can’t support ourselves with it or in an extremely customized setting, but are terrified that if we work too much we will lose access to supports that we need. And what if we do leave the program and crash, becoming unable to work again? MAWD helps make a return to work possible, and the idea less of a threat. Right now it works as a buy in program- if you are making too much to keep getting SSI/SSDI, you pay 5% of your monthly income and are covered. The new plan, however, removes MAWD and the specialized support in navigation that MAWD has for people with disabilities and lumps you in with others. Additionally, the proposed plan has an income limit of 133% of the poverty level compared to MAWD’s 250%.

All of this is just specific to people like me. If you aren’t in an exempt group, there are premiums, additional income limits, hour/week work requirements (you have to work more than 20 hours a week or else you have to be actively searching for a job), and you can be barred from Medicaid for as much as 9 months at a time for missing a premium payment. As someone who believes that access to medical care is a human right REGARDLESS of if you have a job, do the “right” things, or lose track of your bills, I find it morally reprehensible. But even without those beliefs, even just sticking to the changes for those who are already medicaid eligible, it’s clear that this new plan would devastate the poor in our beautiful state.

So much for “Healthy PA.”

The deadline to submit comments is MONDAY, JANUARY 13th, 2014 (Edit: Has Closed.).

You can submit your comments according to this info from DRNPA:

It is important for the disability community to submit comments on the Draft 1115 Waiver application.  Written comments must be submitted to the Department by January 13, 2014.  Written comments may be emailed to ra-PWHealthyPA1115@pa.gov or mailed to: Department of Public Welfare, Attention: Healthy Pennsylvania Waiver, P.O. Box 2675, Harrisburg, PA 17105-2675.  Persons with a disability who require an auxiliary aid or service may submit comments using the Pennsylvania AT&T Relay Service at 800-654-5984 (TDD users) or 800-654-5988 (voice users).

For further information, please check out DRNPA’s Overview. Bullet points are really effective when sending in your comments, so keep that in mind if you send a comment in.

You might not live in PA, but I encourage you to look at your state’s plan- some of the other plans out there are also questionable, but you might not have heard about them.

AASPIRE, the Healthcare Toolkit, and Why You Should Participate.

Hey everyone, I wanted to share about the AASPIRE Healthcare Tool Kit. This will be a pretty targeted post, but I think it’s pretty important.

AASPIRE is the Academic Autistic Spectrum Partnership In Research and Education, and they use Community Based Participatory Research (CBPR or PAR) to bring Autistics and academics together for research benefiting Autistic adults. This means that they believe that the Autistic Community needs to be equal partners to the research about them with the academics. Additionally they focus on quality of life issues for Autistic adults, and prioritize the concerns of the Autistic community in selecting what research to do and how to do it. Basically, they are working on a model that should be standard but sadly isn’t when it comes to research about us.

Over the past couple of years AASPIRE has been looking at healthcare access for Autistic adults. The first study that they did looked at our healthcare experiences, comparing and contrasting them to the results of not only non-disabled people but also allistics (non-autistics) with disabilities. As some of you might expect, the results were distressing- Autistics regularly have worse experiences and access to care, including preventative care, and more Emergency visits than the other populations surveyed.  Based on this information AASPIRE researchers publish a paper called “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership” in the Journal of General Internal Medicine. There was also a follow up with 30 Autistic adults for some more in depth questions about access to care, accommodations, and other details. They have a page on their site with more details about this and links to several formats of the above mentioned paper.

From there, AASPIRE started on developing a toolkit around healthcare for Autistic adults and our supporters to use. This study is currently still running in phase 3- more on that in a minute- but the goal is to develop a toolkit that will help us get better healthcare- have a better understanding of our own care, have more successful visits, and better access to care. Part of this involved generating a customized report that they or you could send to your General Practitioner/Primary Care Provider to help them understand what is needed to make sure you are getting the healthcare that all of us deserve. It ranges from access information to information on the sort of support you need to follow up on your aftercare.

As you might guess from my interest, I’ve participated in these studies. I love working with researchers who share my ideas about what research about us should look like, and quite frankly I believe that this particular line of research can help a lot of people. With the Healthcare Toolkit, though, it also provided me with a tool that may care team is actually using. When I gave copies of my report to my MH case manager (who used to be a supports coordinator in the ID/DD system I believe she said), she told me that she wished a lot of her clients had or had had things like it. I had her forward my report to all of my specialists which as I have plenty of health issues is a good number of doctors, some of whom I see a lot less often than others. So far, it’s gone ok.

I’d like to encourage people to participate- your feedback helps them figure out how tools like this could be better, and it provides you with a decent report about what sort of supports and accommodations you need to get the most out of your healthcare visits. Participating can have an impact on your healthcare visits depending on your doctors and who you send it to. It can also help the people who support you in your healthcare, if you need that sort of support, support you. I have my mother support me at a lot of the more complicated healthcare visits I have, and to my first time at a new doctor, so I think the fact that I need that kind of support on there (I think- I did it in late October) but that I am still capable of understanding my care helped. For example my case manager now asks if I need her to come with me any time she schedules an appointment for a new doctor. At my new PT’s they understood right away, either because of a copy of the report OR because of the information that my case manager conveyed from it.

If you are interested in participating, I encourage you to check out the information they have available. You can participate if you are either an Autistic Adult of some sort or if you are a major support person for an Autistic Adult. Make sure you fill out the survey after- you DON’T have to actually visit your doctor to take the survey afterwards. I thought so at first but I was informed by one of the lovely researchers that I didn’t need to have filled it out to take it. In return for your participating, you can get either a $30 Amazon gift card or check after you fill out the above mentioned survey.  I really appreciate that compensation even though I’m someone who participates in these things both because I believe in the goals of this particular research and because participating in research- be it for a scientific study or consumer ones- is a hobby of mine. I know others of you don’t share my hobbies, but between the compensation and the fact that you are getting a free tool to use about your healthcare is, I think, something that could appeal to people who don’t have the same hobbies.

I really believe in this project and I really want it to succeed, and the more people who participate the more significant the information that they get will be.

How to Add a Caption File to A Youtube Video

When interacting with people about building access, there are a couple things that I get a lot of push back on. One of them is creating additional documents giving information in accessible language without removing information. The other, and subject of this post, is captions.

Often, the response when I ask for something to be captioned is that it’s difficult, complicated, or would require removing and re-uploading the video file itself. Alternatively, they say that buying a program to create captions, let alone having someone do it, is cost prohibitive. And maybe they would have a point on cost- if we weren’t talking about putting a file on Youtube. Additionally, half the time I am providing them with the caption file. So I explain that no, it’s very easy, and I type out the steps for them to add a provided caption file to their video. I do this often enough that it makes sense to just create a how to post here that I can link people to instead of typing it again and again.

Youtube makes it very simple to add captions to your videos if you have a file for it. Below are the steps involved in adding a caption file to a video you manage. Please note that Automatic Captions are usually almost as or just as bad as no captions. More on that later.

  1. You have to be logged in to the account that the video is on. This is important- if you aren’t, you won’t have access to the video manager or the information edit area of the video.
  2. Go to the Youtube home page. From here we are going to need to get to the video manager, and there are two easy ways to do this:
    1. Beside the “Upload” Button immediately to the right of the search bar is a down arrow. If you click on it, there will be a little menu. From that menu, click “Video Manager.”
    2. The other way: In the upper right hand corner is your user icon. Beside it is a little down arrow. If you click on it, a section of the page expands showing some of your history and some account options. Under “Youtube” is a list of Youtube related account options. One of these is the Video Manager. Click on that.
  3. Now you should be in the video manager. Your uploaded videos should be listed- a screen grab, some video information, and an edit button. Scroll down to the entry for the video the captions are for. Next to that entry’s Edit button is a little down arrow. If you click on it, it will have a number of options for areas of the video to edit or adjust. Click on “Captions”
  4. You should be taken to the Captions list, or where that list would be. You might already have something called “Automatic captions” on that list. Automatic captions are generally as bad as no captions. Ignore that line. Above it is a big blue button that reads “+ Add Captions.” Click on it. From the menu that drops down click “Upload a file.”
  5. You’ll have some options on the new side bar that comes up. This is basically the details for the file you will be uploading, and you need to set them. Under “Track Language” select the language that the captions are in. (If I sent you the caption file, it’s probably English unless otherwise specified.) You have the option of adding your own track name if you want (by clicking “+ Add track name”) but that is an optional step.
  6. Under “Caption or Transcript File” is an “Upload” button. Click on it. A dialogue box will pop up that will allow you to locate and select the caption file. I usually prefer to use a “.SRT” file myself, but Youtube also allows for .sbv, .sub, .mpsub, .lrc, and .cap files. Once your file is selected, click “Open.”
  7. TA DA!!! You have successfully uploaded a caption file to your Youtube video!

If you only have a transcript, save it in a .txt file with a space between each line of text. Youtube can try to figure out the timing on the lines, but keep in mind that Youtube is just running it through a computer and won’t catch things like undetected errors or that the timing the computer selects is too fast for most viewers.

If you like, though, you can use a website called Amara to subtitle the video yourself, or to edit your transcript to add timing. Amara used to be known as Universal Subtitles. It is a simple to use and easy to learn tool, doesn’t require you to download any new programs onto your computer because it’s completely in browser, and is free. That’s right, free captions if you can use it yourself or have a friend or fan of your channel do it for you for free. (Or if you have an intern or work study student working under you who needs something to do anyways.) I put together a video showing how to use it, but Amara has a lot of videos and FAQs that make learning their system easy. If you have your Amara account linked to your Youtube account, it will automatically export the the captions you make for your videos so that you don’t have to  go through the above steps.

I recognize that not everyone has the same learning style, so I created “How to Add a Caption File to A Youtube Video” guides in multiple formats:

There will also be an audio recording of this blog post which I’ll record and put up on Soundcloud as soon as I hit publish. (HINT: This is it!)

On Youtube’s automatic captions: they can be pretty horrible. Yes, they slowly get better, but that doesn’t help any of us now. For a funny (and musical!) example of how messed up they can be, I suggest watching Rhett & Link’s Taylor Swift Caption Fail video. Using some of the frankly bizarre things that Youtube’s autocaptioning feature thought were the lyrics to actual Taylor Swift songs, Rhett & Link put together a mash-up song. It’s both illustrative of my point, and extremely funny.

It is my hope that I won’t be the only person who will find these guides useful to have on hand.  I know I’m not the only one who is frustrated about how few people think to caption their Youtube videos, and I know a few people who will benefit from having it explained to them again.

Because access is for everyone, not just English speakers, I’d love to hear from you if you’d like to translate any of the above into a language you are fluent in. You can also leave a comment if you have any questions or suggestions. If you are a fellow captions user, I’d love to hear from you as well- I use them because of auditory processing issues myself.

In short:

Caption thy videos . . . So Say We All

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