Abilities Expo 2014, Chicago

Let me just start this piece off by saying that I love Abilities Expo.  This is my second time attending, and every time I go, I meet some seriously awesome people, and I see some crazy cool exhibits.  The last time I went was two years ago, and in that short amount of time you could see some impressive advancements in the special needs community.

  That being said, if you've read any posts in my blog before this, you may know me as a person that likes to give the full story of a picture, rather than just the highlights or the overall theme.  I loved going this year, and I went with a colleague this time around, so I got to view the event from a couple pair of eyes- one which has been here before, and one who has not.  Yet, with all the good vibes going around, there's a couple of things that I feel like if I avoided sharing, you wouldn't get the REAL feeling of Abilities Expo- and likely any expo dealing with special needs as an industry, rather than a specialty job function (such as the speech pathologists convention, or a behavior plan analyst exposition for a new device or behavior certification).  So let's begin, shall we?

Walking in:

Parking is terrible.  And that's a good thing.

Let me explain.

At most conventions, you have cruddy parking, because everyone's rushing in an the closer spots fill up first, and you know, normal stuff.  In this convention, there is a special focus on what it means to have a physical disability.  That means, I had to park in the back, while people who had mobility difficulties or devices got to park nearer to the convention center.

Little things like that make you appreciate that this isn't just a convention that is pitching a new product, and actually planned out the small things like considering how parking affects their population.  I don't know why, but I really kind of liked that.

Getting registered was quick and free.  They offered mobility services at the front, as well as sign language interpreters.  I saw that the mobility services were free, I'm not sure about the interpreters.  The lines were short-  It's a convention for people with special needs, not a comic convention.

Look at my mad camera skillz.

The first thing you see on walking into the showroom is cars.  Minivans, cars, vehicles, all attached with some form of mobility device transportation modification.  As such Braun covered most of the center aisle, and the front of the convention.  I come in from a business background, and what this tells me is that BraunAbility's transportation services, and Toyota Mobility have the money to put up a good bit of the show, and that while you're there, that's their marketing bucks at work.  At a comic convention this would be DC or Marvel.  At a Speech Pathologist Convention (yeah, the co-worker I went with as a Speech Pathologist.  If you guessed that by now, you get a gold star) the name that's all over the entrance is Super Duper Publications.

All around them are smaller companies that either make mobility devices, or smaller interest transportation services-  like the modified chopper by LifeTrike.


                                        


You see, Abilities Expo is very much an expo for physical handicaps.  There's bits and pieces here and there for developmental disabilities, but by and large the companies, the exhibits, the workshops, and the support groups focus on physical disabilities.  Part of that's because there's a lot more money and interest in working with people who have physical disabilities, especially from people who have taken an injury and are desperate to get back to what they were doing.  That same sort of drive doesn't tend to make the developmental disability community think about putting on a public showing.  The other part is because people working on the DD part of the spectrum don't really ever work together about anything ever.


Big Ticket Items:

Obviously the cars were the money makers here, but you must be wondering-  What were the coolest, the neatest, the bees-kneesiest, and the other clearly outdated terms for super-swiftiest exhibits at Abilities Expo 2014?

Two words.  Exo.  Suit.  Actually, that's a compound word.  That's more like...  two syllables, except maybe it's three with the 'x'?

Guys.  EXOSUIT.  The pictures I took were from the 27th, and they got FDA approval the day before.  I'm stepping on the coattails of history, just showing you guys this.

This picture basically shows nothing.  You must be wondering why I even posted it.

So.

Cool.

Oh, and I got some videos, so when I fix those up, you'll get to see it in action.  The company is Argo Medical Technologies, and the lower limb exoskeleton is specifically designed to help assist people who have no feeling/movement below their navel.  Designed for paraplegics and quadriplegics, users learn to use new muscle groups to actually stand up and walk for themselves.

When she demo'd the device, she had a crowd.  There was a man who started sobbing.  It was really, really amazing.  She explained that bathrooming took less than a quarter of the time as before, and that she didn't have to deal with accidents since she began.  She explained that many of the health benefits associated with walking were also applicable to users of the device.  She explained that there were a few users who had feeling below their legs, but no mobility, but they had a harder time learning the new muscle movements associated with the device.

She also said that before the FDA approval, the company had all sorts of health insurance companies lined up and setup to include the device into their policies, and that since the day before they had GOTTEN FDA approval, basically all the holed up waterworks were about to come into place.  Better buy those stocks now.

___________________________________________________

Number 2 on the coolest cool stuff list was the Port-o-Hypobaric Chamber.  I'm not sure that that's the actual name (P.S. that's not the actual name).  The vendor was Integrative Hyperbaric Centers.  Now, I want you all to know, I'm not endorsing the science behind usage of Hypobaric Chambers.  The pitch that was made to me was that it was a magic bullet solution for everything, made you smarter, healthier.  It's the same kind of pitch you hear for yoga, acupuncture, vegetarian diets, meditation, gluten free diets, etc.

But, like yoga, acupuncture, vegetarian diets, meditation, gluten free diets, meditation, gluten free diets, etc...  there are likely some people who benefit from the use of the devices, or some people, who by believing they benefit from the devices, thereby benefit from the devices.  Or, there may be some specific diagnoses that benefit from the devices.  Really, the cool thing is that instead of carting around an iron lung, the ting can fold up and be put onto a plane.  That give people options for care that they didn't have available before.  And if you really get any benefit from this, it's because you're offered more options on care.

____________________________________________________

Two years ago, there was an exhibit by this art therapy group which used a steam-roller type device so that people with physical and developmental disabilities could push/pull the device to make art with chalk or paint on a variety of surfaces.  The booth was average sized, two years ago, and fit in nicely among the other vendors.

This year, ZOT ARTZ got a large booth, and then a showroom area to have people actually test out the device and play with it socially.  The group now was showcased by a small number of people, who apparently, in addition to the rolling pins, have events with fluorescent, black light paint.  The events, while for anyone, specifically appeal to those of us who are autistic.  I only got to see photos from the events, but they looked VERY cool, and the guy was very kind and interested in working with organizations.

General Fare:  


While the big ticket items were really cool, a lot of the smaller vendors and exhibits were cool too.  Many were mom and pop shops, where family members and persons with disabilities were starting up their own program.  There were support groups, and art kiosks, and workshops.

The cooler things (to me) that I saw were things that had to deal with the wheelchair accessibility.  There was a company that custom-made wheelchairs, with cool wheels that looked like they cool be rimz.



On the other side of the Expo was a repair pavilion.



I saw a booth for Wright State University, which has a crazy awesome program which gets people with physical and developmental disabilities into dorms and college programs specifically presented within consideration to that effect.  They even have a specific program for auditing classes which teams up with a nearby community college to flawlessly provide service between the two.


The Man:


The one booth I didn't see there this year that I saw two years ago, was a generator company that sold emergency generators to people.  Now, you might not feel anything about it just by hearing that, but think about it like this.  If you have a breathing tank, and a storm hits, you need it to continue to help you breath regardless of if the grid is down.  People with sensitive immune systems during intense heat or cold are not going to just be able to wing it until ComEd gets everything back up.  The people selling the generators knew that people needed their stuff, and they acted like it.  No showmanship, no nothing.  You felt super sketched talking to the guys, because they seemed confident that someone would purchase their gear, they were just going through the motions.  Left that super sick feeling in your gut, like after White Castle, sliding right through (I've never had a Slider, I actually have no point of reference about this).


The Snake Oil Salesmen:


The other part that made you kind of creeped was the people selling the current hot-button tech at a number of the booths across the show.  Two years ago, that tech was catheters.  Every five stops, you'd see another young salesperson willing to give you their 'special vendor package deal', and have the bells and whistles that I guess catheters have.  This year, the TENS units took the stage.

TENS units are a sort of pain therapy equipment which have been recently become fairly popular.  When my back went out over the winter, I told my insurance that I needed one, and they got me a cheap-o one with a few settings, I think it came straight off of a China Import Storefront on eBay.  The ones they were selling here were neat, had a glowy screen, and could hook up to your ears and feet to help relieve headaches and foot pains.  They're pretty nifty, but regardless of the tech and its coolness factor, it's one of those things that has its followers.  Any time that you say that it can cure every kind of ache and pain, and then cure things like allergies and impotence, you should think twice before your pocketbook out.


All-in-All:


Abilities Expo is my favorite convention, and you definitely get a unique perspective on the community after watching shows and interacting with the vendors here.  It's a friendly environment, with a unique culture which doesn't often have the opportunity to showcase themselves and gather together.  If you're a newbie in the field, or a vet, if you're a parent, or have a condition which others qualify as a handicap, you'd have a fun time here.  One of these years, I'd like to see more of the workshops, so if this post interested you, gimme a call next year when the Expo rolls around and we'll head over as a pack.

Outrage

So, double post today, because I had already written something to post when I got online again, and because I have something new to say as of today.

I want you to know, if you are reading this, and you still think that working with people with special needs makes me some kind of saint, that you're dead wrong.  After introducing myself as an astronaut, a poet, a renaissance man, a political leader, and- after a friend on the sidelines would add 'he works with people with special needs'- countless times people meeting me would remark, "you must be so patient".  Truth is, I'm really not.  Yes, I can deal with students not looking at their work tasks and trying to rush through them, for hours on end.  Yes, I can deal with a kid screaming in my ear, or punching me in the face.  I can deal with diaper duty, and lunch preparation, and temper tantrums, and the whole gambit.  I can be patient with my guys, because I'm awesome, but not because I'm a patient person.

As I was thinking about how to start this post, I just kept coming up with expletives.  I'm pretty sure my first mental draft was something like "fuck those fucking fuckers", in various iterations, and very likely very specific descriptions, for about thirty-five pages.  And part of me still wants to write that.  Just because I can deal with people with special needs does not make me a patient person.  It just makes me a patient person when I'm dealing with people with special needs.  The truth is, when some loud-mouthed entitled jackass puts down one of my guys, in specific, or in general, I very much want to donkey-punch those stupid motherfu-

Er...  Let me get back on track.

So, today after work, I got an e-mail from the Big Man in Charge (BMC).  It was a letter informing us that we had been attempting to put together a group home in B~ Village.  Apparently, through some means that was not described in the message, the trustees of the village made it abundantly clear that they would be denying the application to build the group home on the property.  Dozens of citizens of B~ stood up to make absurdly ignorant and absurd comments about the population, and despite the law being in favor of my company, and the meeting being open for discussion and transparent to participants, the zoning planning commission were 5 to 1 against the opening of the group home.

Thankfully, the BMC of my company was not asking us to send letters or beg in some way, but instead decided to pull out of that area, so that we did not have to place clients into a hostile, ignorant village.  He also invited anyone in the company to come show support.  If I'm in town that day, you can damn well bet that I'll be waving a B~ Village Flag, super-imposed with a large penis on it.

The thing is, this isn't rare.  It's fairly common for zoning boards to deny adult group homes access to their community, usually by simultaneously arguing that a commercial property cannot be placed without a sprinkler system, and then also refusing to push through a permit for the company to put into the building said sprinkler system.  One of the families I worked with at Always Learning While Living had run into their town doing this same thing, for the very same reason-  I'll reach out and see if they'd be willing to write about it on the blog.  Different town, same bullshit.

Look, let's face it.  No reasonable person goes to town hall meetings.  The only people who do are people who are too ignorant for anyone to listen to them, too old and pickled for anyone to listen to them, too insane for anyone to listen to them, and the people who are on a power trip, trying to move up in politics, and who have to listen to all these people.  And, I couldn't tell you who my town's mayor (?) is, or when city (?) elections are either.  I have a life, and people to talk to, and things to do.  I don't go to town meetings.  So, I get that the people who came up and had something to say were the screws loose from an Ikea table, the marbles that popped out of a Dollar Store bag, or the dullest colors in any crayon box that isn't Crayola.  It just sucks that democracy lets these people matter, even for a moment.

If there were any justice in the world, there'd be a masked crusader who would find out about people like this, and in the middle of the night break into their house, and kick them in the face.  C'mon people, I'm not asking for a lot here.

Anyways, if you know what's happening in specific, and want to join me at the meeting, I expect it to be the second meeting that I will be walked out by the police for, so if you want to see that, you should go.  And, if you want to know the specifics, get in touch with me, and I'll give you the deets.  Personally, I think that this kind of story should be in the news, you know, ever, but what kind of isolated minority would we be if we had THAT kind of press coverage.  I guess we're indie enough if we're able to say "I worked in special needs before obvious prejudice was publicized'.  That's pretty cool, right?

Graduation: Our Weird Other Family Part 2

  There are segments of the Special Needs universe which, even for the field, are more specific and isolated.  These segments have their own cultures, their own worries, their own woes, and while they may feel every other thing that you’ve read about thusfar regarding paraprofessionals, they or you may not be fully aware of intricate little concerns and thoughts.  This example is one that relates to students and teachers in a school setting, becoming more defined around transition age.

  When you think of the word “graduation”, it is generally considered a positive event.  There’s a long, boring ceremony, friends and family gather to watch, there’s some applause, some cake, and maybe a really important piece of paper that you’ll eventually hang up against your office wall like it was somehow worth the cost of tuition.  In our field, the definition is somewhere between a finely polished turd, and a sarcastic remark about society.
  In our field, there are two distinct definitions of graduation.  The first is that due to reasons outside of the student’s or teachers’ control, this person is going to be relocated to a new program, with new staff, a new class, and often a lot of transitional mess.  It can be as small of a move as into another classroom in the same building, and as big of a move as to a brand new school, and/or living situation.  It’s a chance for a school to show parents and family members that they are still involved in their child’s life, and in the very same way that junior high schools hold graduations, is more or less for show than actual accomplishment.
  Then there’s the Big “G” Graduation.  Where the best comparison for the other kind of small “g” graduation is junior high school, there isn’t a decent comparison for Big “G”.

  Wait a second, let me put this space here to dramatize this.  This is where the real blog post begins.  Like, right…   now…

High School Graduation is sort of an achievement, sort of a tradition.  It fits the role of acting as a celebration to help the average high schooler adjust to the idea of adulthood- whatever that means at 18 years of age.  Then, College Graduation is more of an achievement, where you celebrate the end of the accrual of your student bills, drink alcohol, and transition to the idea that you’re gonna be moving into your parents’ basement and looking for a job on Monster.com.  While both are a sort of “farewell”, they are more like…  a rite of passage.  You go from boy/girl-child, playing with toy spears, hunting pretend mammoths, to the fully grown wo/man, with a real spear, hunting real mammoths (on World of Warcraft with the money you make after taxes).
  What I’m saying is, the emphasis of a Big “G” in a typically programmed High School or College is to benefit the student, to welcome them into adulthood, and to remind everyone in attendance that they are no longer the school’s problem.

   Big “G” in OUR field might as well stand for Goodbye Funding.  It happens the day before the student’s 22^nd birthday, and marks the occasion where the amount of money allocated to make sure that any child, no matter what race, or religion, or ability level, can go to school magically disappears.  It’s a celebration to mask that while special education is relatively (RELATIVELY) well-funded from ages 0 to 21, anyone 22+ has to deal with a mish-mash conglomerate of organizations that are all exceptionally under-funded, have no media presence, and live in a virtual ‘wild west’ of laws.  With a party hat and some streamers, we bring in a cake to introduce our friends/students to the world’s Big “G” Go Fuck Yourself, and Go Figure It Out, where they leave our care, where we spent all day, every day, trying to get them to learn, grow, achieve, and find joy…  Into the hands of a notoriously small number of group homes and day programs, many of which only serve people who can be successful in 1/10 and 1/15 ratios, where even those programs have waiting lists, and cost a pretty penny to enter into.  AND, if they don’t like the student, for whatever reason, they may just drop service for them.
  “Graduation”, for us, is the soft spot in our chest that gets number and number as we watch students leave, knowing that once they leave our organization, we may never see them or hear from them ever again.  It’s the Big “G” Gone feeling that you have to get used to if you want to survive more than a few years being a paraprofessional.  It’s the Big “G” Gulp at the end of the day where you take your poison back at your apartment, and stop wanting to think or talk about work.

  I’m not saying that people shouldn’t throw Graduation parties, or whatnot, or celebrate the memory of the student.  But I mean, even the way that sounds…  “Celebrating the memory of the student”…  It feels like putting the fun into funeral.  I guess what I’m getting at is that if you know someone who works in the field, and after a Graduation they don’t want to do anything, it’s not because they’re all tuckered out from the party.

  The one thing I CAN say, however, is since our students tend to have small class sizes, at least the commencement stuff is really quick.  I mean, seriously, waiting two hours for a list of names to be rattled off by some old guy that you met maybe once…  Forget that.  So, I guess there’s at least that.