New Year~ aka, That Post Where I Talk Difficulties in Goal Setting

Hello folks! This is a more informal post than usual, so your patience is appreciated and I promise I’m working on a post more typical of my blog for sometime later this month! [Note: contains some mention of abuse and PTSD.]

I have a big goal this year- the same goal I had for my Birthday, and for Rosh Hashanah: write more. I enjoy writing, and I enjoy the feeling I have when I hit publish, and yet I write so rarely. Part of this is executive dysfunction, part of this is depression, and part is anxiety. Lately, I often find myself using the excuse of “well, if I’m doing so well right now, I ought to use that exclusively on work stuff!” any time I have more than a few minutes of good processing power in me. (In fact, when I’m done with this post I’ll probably work instead of doing any of the zillion things I should be doing for myself, being as how it’s technically winter break. Oops.)

If I have to quantify this goal- because I’m really trying to train my brain to think in SMART goals as well- I’m aiming, as always, for 12 posts minimum in 2016. I hate quantifying my yearly goals though. When I fail, there’s this wave of “not okay” that comes over me. Back when I did weight related rather than action related goals, this would trigger an eating disorder behavior of some sort.

But the big thing is really PTSD related. Any time I fail at anything- even something small that other people aren’t really bothered with- I have Rick’s voice in the back of my bead going, “If you weren’t so smart, we’d lock you away.” “We should lock you up, you are worthless.” “I don’t know why we bother keeping you at home.” On bad days, it leads to a dissociative episode. And really, this is usually UTTERLY disproportionate to the stimulus that triggered it, because that’s how PTSD works. Having a spelling error pointed out at the wrong time has lead to hours long episodes- I still work, in fact that might be all I do other than cry and repeat bad mantras, but it’s still there. I’ve had larger episodes that have faded in and out over a week. It’s ridiculous, really impacts my ability to behave professionally, but it’s also uncontrollable. I’ve gained the ability, slowly and over time, to make it more something that can be hidden behind the computer screen (thank you telecommuting- there’s no way I could last in an in person office at this point.) But even that doesn’t always work, because of the nature of a dissociative episode makes it even more difficult to conceptualize what works in a reasonable turn around. It, in short, sucks.

There are other general goals I have too, but they are perpetual ones that I always have. Leave the house at least once weekly, preferably more often and under my own steam but once with help satisfies it. If I don’t, the agoraphobia sets in heavily. It becomes increasingly difficult to leave, particularly under my own steam. Even my ability to call anyone on my very short “safe” list gets smaller. (Currently, the safe list is my parents, siblings, niece, eventual-BiL, and best friend.) And while I’m not always successful- thank you mix of mental health wackiness and chronic illness- It’s something I continue to try to work on, with no end in sight.

Speaking of, one of the things I’m going to aim for today? Walking to Sheetz in my town. (I made it to one of the pubs last night, though I got out before the NYE celebrants started showing up en mass.)

Heavy pale red headded femme in a Tardis Dress, Tardis head band, lots of makeup, and steam-punky jewelry in a pub

Here I am around 7pm New Years Eve about to leave the pub I made myself go to to fulfill my goal. I had the bouncer take this so I had a picture of the dress on me. [image description in alt text]

Try to work on phone phobia is another perpetual goal. This week, I actually called someplace to order food- and it was a big deal. I’m going to call my best friend, who it’s become harder to call, when I’m done with this paragraph. (Thank you new year for the scripted calls you make possible.) This aspect of my mental health disabilities is a particularly disabling one, both personally and professionally. Some of this has improved as people in general get more comfortable with ascribing meaning to online interactions. Some of it I’ve developed accommodations for myself, though the willingness to implement those accommodations is hit or miss, even in the cross-disability community. People just don’t get that I can speak on a webinar or scripted/semi-scripted telecast but can’t handle an actual phone call with ease. It’s an entirely different format to execute for me, but it’s still a struggle.

This is a thing that I’ve decided to work on- even though it’s disability related, and even though I still try to implement my accommodations. Sometimes it feels even more difficult, because too many people don’t get that the ways you are disabled fluctuate depending on a lot of- and sometimes difficult to identify- factors. But it’s something that seems an area that I want to work on, which is reasonable to work on, and which comes with many opportunities to celebrate small steps and have it understood by my fellow phone-phobics and phone-averse people as to why it’s worth celebrating, and why it’s worth working on. I don’t know if I’ll ever reach a point where the phobia is completely gone, or where I don’t need any accommodations sometimes, but I do hope that I can get to a point where I can still grit my way through the times where people aren’t willing to work with me about it.

(Aside: AH VOICEMAIL. What a glorious invention.)

I forgot one thing! And this is for you too! There’s an Instagram challenge that Two Thirds of the Planet is instigating this year called #365dayswithdisability! Just post a picture of your disabled self/life every day with the #365dayswithdisability tag on Instagram (or twitter, Insta is kind of hard to access if you don’t have a smart phone!) My personal Instagram is @nicocoer if you want to follow me!

Anyhow, I hope this post made you think about your own difficulties with setting and completing goals. Feel free to share those- or even just your new years goals!- in the comments below. Happy 2016!

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

A Quick Note On: Disability vs Impairment

In the past couple of months, I’ve spent a lot of time reviewing curriculum and reading some research papers/essays that some people trying to be decent allies have done.  A lot of them do an okay job on some things, and a less great job on others. But the most common issue seems to be conflating “disability” and “impairment” in a way that reflects a relatively un-nuanced understanding of the larger disability rights movement.

The most basic definition of the Social Model is along the lines of a person is disabled not by their impairment, but by their environment. Sadly, many people fail to look at this and see more than “society alone is to blame for disability.” I see people who say that social model isn’t realistic, based on this misconception, for individuals with extensive support needs.

This fails to take into account the possible corollary that within an appropriate context, a person’s impairment would be irrelevant to their abilities. Here’s an illustration of that, and a very standard one:

Imagine a wheelchair user named Mary. Mary’s condition includes impairments in being able to support herself due to muscle weakness, so she needs to use a chair to get around. Mary goes into a general world, and there she finds that people who she shares interests with meet in a space that is up stairs without an elevator, and that the coffee shop that said it was accessible actually has a stoop too high to wheel over. But if Mary goes into Accessible Town, elevators are in the buildings and the buildings were built/modded in a way that doesn’t involve stoops, and where the halls and doors are wide enough for her electric chair.

Mary didn’t magically stop having her impairment. Instead, her environment no longer interfered with her ability to participate fully in the community of Accessible Town. Unfortunately, people look at the stories of hypothetical people like Mary and go on to claim that that is all well and good for people with physical impairments, but that those with intellectual, developmental, or psychological impairments. This is inaccurate.

Bob is non-speaking, and uses alternative communication. In general world, people become impatient or dismissive because they do not want to deal with alternative communication. (This is similar to someone who doesn’t speak the typical language in a country they are visiting, unfortunately.) Bob goes to Accessible Town to meet his friend Sue, who is Deaf. People wait for his responses, don’t try to speak for him without his permission, and ask for help understanding when they do not. Bob’s other impairments might preclude him being able to learn much of the sign language his friend Sue uses to communicate, but her interpreter is great at making sure both of them can understand each other, even though they are speaking different languages and styles.

Bob is still non-speaking and still has intellectual impairments. But he is able to not only be actively involved in this community, but to communicate and hopefully have a good time with people with different access needs entirely. In this particular context, his impairments are not disabling him from this sort of participation. He has the support, both technically and emotionally, to be a full participant.

Some people see this as just a fantasy. The standard that they hold up as “too disabled” shifts to higher and higher support needs each time we try to explain how that hypothetical person could be supported. At some point, it has become a game, which is why my examples of the hypothetical Accessible Town will end. The truth is that what access looks like will vary by person. It isn’t an easy thing at all, especially in our current world, to create environments or communities that balance people’s access needs. This seems especially true when the most needed aspect of that process is patience and trust.

Note, if you will, that a condition that may be referred to as a disability might have traits that are not impairments in and of themselves. While stimming can be a coping response to an impairment, perhaps with self regulation or sensory hyper awareness, it is not necessarily so. In some cases it is simply used as an expression of emotion- atypical, sure, but not an impairment. The only disabling factor when it comes to stimming, barring those which involve self harm, is that other people are jerks about it and project prejudices and bigotry about how people are supposed to look. Essentially, it is simply other people’s assumptions, not the behavior interacting with the environment, that creates barriers. Yet it is one of the traits by which Autistics are diagnosed.

The next thing is something that I don’t know how to introduce properly. I see a lot of people approach the idea of Neurodiversity as though it is some new big thing completely different from other disability things. The truth is that it simply is applying the larger disability rights movement to the experiences of people with certain impairments, often defined as Autistics.* It is not some great new thing that we came up with via spontaneous generation, without previous foundations. It was built on the work of many people who live with a wide range of disabilities.

When we talk about both needing disability supports and treating our impairments as differences, we are not being disingenuous. We are not “talking both ways.” And it is not about denying legitimate supports. It is an incredibly nuanced issue, but one that can be summed up in a phrase that isn’t terribly new or specific to Autistics, and is in fact used on materials put out by the Administration on Intellectual and Developmental Disabilities (AIDD):

“Disability is a natural part of the Human Experience.”

This is the core idea here. Disability is one of many natural variances in what the human experience is like. It is not inherently shameful,  “freakish,” or unnatural. It does not rob us of our humanity– that is instead done by the perceptions of people. It is part of the amazing and beautiful diversity of our amazing species, Homo sapiens sapiens. It is a part of who we are and how we are put together.

This diversity can be powerful whether you are a religious creationist (indeed, there are hymns about this), an Atheist who believes in an unmitigated evolution, or any combination thereof. On a personal level, I believe in theistic evolution, and the vast diversity which allows for the survival of the species is something amazing and beautiful and spiritual for me. But I believe that the fact that we are so amazingly diverse, that we live in such a diverse world and are such a diverse species, is something that can be beautiful and powerful regardless of your beliefs. (Reminder: this is not a post about evolution or religion. These are tangential issues.)

When we talk about Autism or any other condition as a difference, we are not inherently denying that people with those conditions face disability. We are talking about how our conditions, and the impairments that might come along with them**, are a natural difference in the species. That those differences, like any number of others, should not bar access, dignity, or respect. That our differences are not things that should be eliminated, but that we should work towards a society in which difference is not a bar to access, be that because of changing attitudes or changing our physical environments.

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Talking about these distinctions isn’t something new. Please consider checking out some of the links below in which a number of other writers have covered similar issues.

That Crazy Crippled Chick: A Musing on the Word “Disabled”
Radical Neurodivergence Speaking: In this place, in this activity, I am not disabled.
Yes, That Too: Ableism is to BlameA Social Construct
Autistic Hoya: Has an entire tag dedicated to this issue

Additionally, there’s a nice bullet-ed definition of the social model on the KASA website.

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* I personally consider Neurodiversity an issue that covers a wide range of individuals whose brains don’t exactly fit the “typical” brains or ways of working.
** Some people do not follow this, but they are a small subgroup who are often not aligned with the principles of the movement.