Friday, August 29, 2014

Communication Pathology

   Alright team, it's been a little while since I last posted.  Work stuff has been going on, and while it's usually a lot easier to write from current experience, it's also stuff that I've covered on Paraconfessional before.  As much as I love to hear myself talk (watch...  myself write?), I am not big on beating dead, live, half-dead, or any kind of horses in general.

   I actually have been trying to do some interviews and research for a couple of topics I'd like to cover over the next month.  The Title for this topic group is "Communication Pathology", which is sorta why I named the post that.  What I'd like to explore is how the different organizations that provide a majority of the current-day structure of the Special Needs world have made it difficult to provide a service that is valuable to the population that we serve.
   The idea is sort of simple.  Companies that provide the standards (which then become the 'structure') for care, also charge an obscene rate for those standards.  From computer programs like Boardmaker, to Nonviolent crisis training institutions, specialty companies develop intellectual property that many organizations and participants are taught to rely upon, and when those participants transfer between programs, the new host program must either decide to purchase into the company whose standards are being used, or allow everything that built a participant up to fall by the wayside.

   And let's face it, with how hard it's been for programs working with Special Needs to rake in dough lately.  When participants reach adulthood, many programs simply drop the supports and see if the participant still fits into their program.  If they don't, they get cut, and they try again with another potential participant.

   I expect that my next post will be about Boardmaker and Dynavox.  Either within that same post, or the next post over, I plan to cover News 2 You, Unique, and Symbolstix, compare and contrast, and go over the implications of the company-owned standards of education that proffer in our field.  I plan to explore the history of, and the current systems in which these programs exist.
   I then plan to cover how nonviolent training programs work, how trainings work, where the certifications awarded are considered valid...  And describe in general the way that the different programs compare and contract, and if possible, some demographics behind where the certifications are more common.

   I may approach other specialty devices, and do a clarity piece which explains the difference between the business of working with devices which have a limited population in their demographic range, and the ethics and business structure behind companies which develop specific standards which we have to utilize in the field to be safe and useful to our clients.

   After that, I plan on going into Always Learning While Living, how we got started, what a person needs to do to make an Adult Day Program for Adults with Special Needs in Illinois, and that sort of stuff.  I've been procrastinating on it long enough, and I know that there's an interest out there to know some of the specifics about it.

Alright, all, peace until my next post.  Happy Friday!

Thursday, July 24, 2014

The Most Inspiring

 Let me preface this.  (If this is not okay, then…  I don’t know.  I’m gonna preface this.  Deal with it.  *elaborate hand gesture*)  I don’t speak for every paraprofessional.  Even more than that, I don’t speak for every person who has special needs, every parent or family member of a person who has special needs…  I don’t speak for every human being.  I may always be right, but I’m not here to stomp on anyone’s feels and I don’t know what it’s like to be x, y, and z.

I do know how it feels to be me.

And, in the grand concert of living this ‘being me’ thing, I want to tell you about being inspired.  First off, I grew up with my formative years in the nineties, a generation of people who were already bored of everything that the 80s had to throw at it- including shoulder pads and crotch stuffing.  We listened to Smashing Pumpkins vocalizing profound apathy while carrying a paper bag in our hands on the way to elementary school.  I may not have seen it all, but I damn might as well.  So, when the topic of inspiration comes up, often I vocally make an ‘eh’ sound without even realizing it.

Sometimes right in front of a motivational speaker as they’re trying to motivate me.  Yes. That actually happened.

As a para-educator, I get to see all the corny 80s movies about introducing the concept of autism to the general populace, often colored in this Technicolor over-animated vision of hope and triumph.  A general theme of positivity outlines the single message “Look at this person with x, y, and z!  They’re doing this thing even though they have these PROBLEMS.  I feel like, as a person without x, y, and z, that I can do ANYTHING.  That person is a hero!”  And, as many people deigned to be heroes, they then have their humanity stolen from them, and are set up to be a symbol of sorts.  A symbol of SPIRIT and POSITIVITY and PERSEVERANCE and blah blah blah.
And like every hero, suddenly their problems don’t matter.  “I mean yeah, it sucks to have CancerAIDS, but you were able to catch every Pokemon, and since I, a normal person, wish I could do it, you’re practically invincible!”  Because the story of the made-for-TV-movie had the actor succeed in this Herculean trial, THERE IS NO MORE CANCERAIDS AND EVERYONE LIVED HAPPILY EVER AFTER.

Not only does it diminish the actor’s problems, which very likely continue to be a huge problem on a very personal, day-to-day basis, but it give those people who have no experience with working with those who have disabilities an out for how to act around people with those disabilities when they don’t know and they’re feeling the ‘normie’ version of White-Guilt.  “Well, I’ve never dealt with a person with CancerAIDS before, and after watching that movie, I learned that EVERYONE with CancerAIDS is a HERO!”  Suddenly, you’ve got this crowd of over-sympathetic persons acting like they just met a cute puppy for the first time.

And that doesn’t even touch on the media representation of people with Down’s Syndrome or Autism being represented as this mystical, magical future seers who hack into the government every single day.

Alright.  That’s a pretty good preface, right?

I was inspired once.  I KNOW, even I have had a time in my life where something outside of my own doing made me feel stronger as a person.  It was this time I was substituting at a school, and it was Disability Awareness Week.  Usually this time is used to discuss people around us, and rarely include us, or on the other side of the spectrum, it involves conspicuously including us as a school-wide show-and-tell project, only to be forgotten the next week.  If I remember correctly, we were running up the former at the time.

At the end of each of the days that week, they’d have some group come in and give a presentation.  The other days were not memorable, but one afternoon they had to clear the gymnasium ahead of schedule to prepare for the activity.  When we got there, we saw that the front of the gym had been cleared, making a basketball court and an audience.

A state school’s wheelchair basketball team (by the by, probably legitimately the coolest, most dangerous sport I’ve ever seen.  The guys don’t hold back, and it ends up looking like a cross between basketball and Battle Bots) came in to show off their skills and tell us what they did.  They wowed the crowd with how rough they played, and how controlled their actions were- racing within inches of students and stopping quickly.  They were playing to the crowd in a very Harlem Globetrotters sort of way.  They described what caused some of the teammates to end up in wheelchairs, and discussed how basketball wheelchairs were different than traditional ones.

And then they invited the teachers to come play with them.  At first, there was the usual cheering and whatnot, where classrooms felt personally involved when their teacher was called up.  There was some laughter as the teachers got used to the wheelchairs, and were obviously not used to controlling them.  After a few minutes, the teachers lined up to the starting positions, against the state school’s team.

And for a moment, that was it.  I don’t think anyone knew what they were feeling at the time, and if they did, they hadn’t picked a side to cheer for.  But there was this hanging moment between when everyone was getting used to what they were seeing and what happened next.  It was at this very moment, that something happened that made me really inspired for the school, and for the special needs community.

The students started cheering against the college-level wheelchair basketball team.

They shouted for their teachers’ success, and when the opposing team made a basket with complete ease, sometimes running literal circles around the teachers on the court, they booed.  For a moment, after all the platitudes of Disability Awareness Week, these elementary school students didn’t see a group of inferior individuals they needed to feel poorly for, they didn’t see a group of heroes they needed to praise for simply existing, they didn’t see a group of people who existed only to provide a life-lesson about never taking what you have for granted.

They saw a threat to the people they cared for, albeit a threat over honor and prestige rather than physical and immediate.  They saw challengers from outside showing up people that they knew.  They saw an opposing team that was obviously better at something than their own teachers.

They didn’t see a group of people with disabilities.  They saw a group of people- a group of professionals at that.

And for a moment, my heart fluttered.

Sunday, June 29, 2014

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.

Friday, June 6, 2014

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 22nd 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.

Monday, May 26, 2014

The Black List



As a paraprofessional, I’ve been in some pretty tight spots.  Getting hit in the head making sure that a driver can safely stop, or trying to stop a participant from going after a vanilla-normie…  There’s many situations where it’s uncomfortable to try and explain what’s going on, and a good number of those where even the best para isn’t going to know all the details.

And while there are many people who will come by and thank me for doing my job, and tell me that I’m such a good person for basically making it to work every day (spoiler alert:  I’m not such a good person all the time), there are a fair number of people who walk into a situation and automatically decide that they know what’s going on basically because they were the first vanilla-normie on the scene.

That leads to some pretty questionable calls.  Paras that will be getting punched in the face will have cops show up, and have had it reported to them that people saw them punching the participant in the face.  Paras who use a commanding voice to try and kick a guy out of whatever they’re doing are told to stop yelling at the participant.  I’m not saying that our students and clients shouldn’t be taken seriously, but it does lead us to being put on the line, more than the physical, mental, and emotional stress already placed upon us by performing the job as per usual.

It leads to The Black List.  Now, for anyone who is reading this who isn’t a para, “The Black List” is pretty much the same thing as a burn on a spy, if you’ve seen Burn Notice.  It’s an unofficial listing of people who will, for one reason or another, never hired by any agency that works with our population, as well, often, as in any agency that works with children or the elderly.  It “doesn’t exist” in the same way that modern racism “doesn’t exist”.  There is no website that has the names and the offences of people who have been black-listed.  There’s just a cultural backing, a rumor mill, and a mutual understanding between parents and agencies, as well as by other paraprofessionals.  When you’re on The Black List, you’re looking for a new career, probably in a new area.

It exists for a pretty legitimate reason:  You don’t want bad people working with people who cannot speak up for themselves.  You don’t want Chester the Molester running around with a trenchcoat and teaching kids about how to dress themselves.  You want that mofo under lock and key, and as far away from you and yours as possible.

But the problem is, it’s not a “real” list.  There’s no court that sentences you to sign your name on The Black List, and thus you have to stay 50 feet from schools and animal hospitals or whatever, and post that you’ve been listed.  There’s no set of checks and balances to do quality control on who is on the list, and who isn’t.  Say that a perfectly capable and earnest para gets caught in the crossfire of politics or a parent with an axe to grind, and the rumor mill carries away an outright lie.  They’re still black-listed.

It doesn’t help that organizations that tend to work with our clientele are also constantly looking to be noticed for how just and true, good and kind they are.  I mean, seriously, they’re like sad little puppies that are looking for love and affection- except instead of love, I mean money, and instead of affection, I mean good PR.  The minute the story of an abuse case comes up, suddenly they have a band of parents with pitchforks and torches ready to go to town on them.  So what do they do?  At best, they pull the person from working with the participants (often without pay) so that they can ‘investigate’ the matter for weeks or months at a time.  At worst, they fire the person and never even really look into it.  In the latter case, the para is instantly on The Black List, and in the former… well, they just as well might be.  No one wants to trust a person with their loved ones who has had allegations brought up against them.  The same employee who was indispensable to the company for years, is suddenly too hot to handle, and the company either throws them directly under the bus, or they do nothing to help repair that person’s reputation and they go the way of the slow burn.

It’s sad, in an industry that pays so little, that has as hard of a time hiring people as it does, that the reward for service is often a kick to the curb.  I mean, pretend that the turnover rate among paraprofessionals wasn’t so high.  Pretend that a person outlasted their forties in the field, and started getting up to their fifties and sixties.  How much time does a person have to spend in our position before they end up with a bad back, bad knees, bad joints…  When that worker bee runs out of juice, it’s not like they find a place where you can still be useful (most of the time).  The rule tends to roll, “you can’t do the work, you can’t work”.

No, by and large the beginning and the end of our stories are all the same.  You come in with hopes and energy, and then you try to burn out before you black out.  Perhaps there’s some solid proof that financially we’re kind of screwed in this kind of work.  Perhaps you have to take the aches and pains with a grin.  But when it comes to The Black List, we deserve better.

Friday, May 23, 2014

Special Olympics: My only complaint




A few weeks ago, I had the privilege to attend my first Special Olympics event.  For whatever reason, in my adventures through The Community I’ve never actually been invited to attend them before.  Not in that ‘No Barry, last time you got everyone drunk and singing Irish whiskey songs’ not-invited sort of way, just that it hasn’t ever come up.  Anyways, here I am, for the first time ever, and I’m floating around working with people and watching events, and seeing people I haven’t seen in a blue moon.

            And it was genuinely a pretty good time.  I mean, with every special needs centered activity, it appears that there’s a pretty hefty lack of communication, and some general confusion, but in my group, at least, everyone who signed up to participate got to participate in every event they signed up for.  So, kudos for keeping it together, team.

            It was great, though.  A number of families came by to show support and watch their family member participate.  There were enough people that the stands were relatively full.  There were the girls- must have been from the high school that was hosting- that were going around to participants, and cheering directly around them.  Which, you know, considering the population, actually caused some incidents in itself, but for the most part it was rather charming, and many of the participants walked away with a big ole’ grin on.

But this article was prefaced with a title that leads one to suspect there was something amiss.

Very astute, Mr. Bolded Transitional Sentence!  My only complaint was that a handful of participants did not seem to actually have wanted to be there.  I mean, I’m not talking about people who signed up and changed their mind on D-Day.  Nor am I referring to people who went, did their schpiel, and then didn’t want to have to wait for the other students in their programs.  I mean people who probably didn’t have any interest in becoming a Special Olympian to begin with, but through pressure of institute, family, or some other outside force, they were conscripted to participate anyways.
            We work in a field of individuals who often cannot voice their own wants and needs.  And while the Special Olympics is an absolutely wonderful event, which truly benefits the people who go out of their way to train and participate for it, it isn’t for everyone.  I mean, yes, it’s for anyone who wants to sign up, come what may, regardless of physical capacity or condition which may cause a conventional competition to shut their doors in your face.  It’s for anyone.  But it’s not for everyone.  Just like our charges’ inability to vocalize wants and needs, they also may not have the ability to discuss preference.

            Let me put it to you this way.  Let’s say that there were a set of physical trials set for people who didn’t have special needs to participate in.  Let’s call them The Less Special Olympics.  Not everyone who exists outside of the special needs umbrella is going to want to train and participate in them.  I, for instance, am much more prone to the ‘modeling for stone statues’ side of ancient Greece rather than the show up everyone with expressions of physical finesse and strength side.  I’m just too humble, and it would really feel bad to kill all those poor athletes’ ambitions by thoroughly trouncing them.  So, maybe, using my ability to self-advocate, I’d do something like say ‘hey, don’t sign me up for them there The Less Special Olympics’.

            And then, having voiced that objection, I would follow up by then not actually participating in The Less Special Olympics.

            However, some of the people engaging in the Special Olympics seem to have had that choice stripped away from them.  Whether by an agency that wanted to show how many of their participants they could engage in them, or by family who wanted them to get ‘as much out of life as they possibly can’, somehow that person, who may have other dreams and ambitions- ones of art, of music, of automotives, or geography, or politics, or anything that lays outside of the quasi-Olympian sport circle- are made to participate.  And that frustrates me.

But don’t get me wrong.
I’m very much in support of the Special Olympics.  In fact, I think that the future of day programming is going to be the sort of specialization that the Special Olympics stand for.  I mean, have I mentioned how much of a fanboy I am for Arts of Life?  People SHOULD be able to pigeon-hole their interests, and do the sorts of things that they really love.  Artists should be able to do art, regardless of whether they have special needs or not.  And athletes should be able to compete.

       But not everyone is going to be an artist.  And not everyone is going to be an athlete.  Just as we should be pushing people to try new things, and let them be included in the world that lays just outside their doorstep, we also shouldn’t be forcing them to be who they may not want to be.

       Now excuse me, I’ve got a block of marble that’s craving my image.