Seeing the Person before the Disability

In the disability world you may have noticed a big campaign going on for the past couple of years.  (At least that's how long I've been aware of it.)   The campaign is called "People First."  It's to remind you that people with disabilities are just people.

Do you wear contacts or glasses?  Did you know that you have a disability?  You do.  It's just that wearing glasses is so common it's become normal.  Nobody considers someone whose eyesight is failing to be disabled.  It's a disability that even has a cure, now - lasik.

The problem is that the general public is a lot less comfortable with the less common disabilities.  Wearing glasses makes you look smarter.  Glasses add to your attractiveness and desirability, at least that's what producers of eyewear would have you believe.  Sitting in a wheelchair doesn't work that way, does it?

If you have kids with disabilities, you have a front row seat to their lives.  You probably don't have any problem knowing the person before the disability.  If you don't have kids with any kind of disabilities, however, it's harder.  It takes an enormously open mind to see the person, rather than the person-in-a-wheelchair or the person-who-can't-talk-normally or the person-missing-a-limb.  Without experience with these people - without having opportunities to get to know the people who live with disabilities - it's next to impossible to have that enormously open mind.

It's easier if you knew the person before he or she had a disability.  If it's something they weren't born with.

Remember Jack Jablonski?  I wrote about him before, here.  He's the local teen who was paralyzed during a high school hockey game.  He has received so much love and support.  It's easy to see Jack, and not the disability because he was a nondisabled person, first.

I met a girl named Marrie last year.  Her name is pronounced Mary.  Here's a short video of Marrie testifying at the Minnesota State Capitol.

She has a twin sister named Carrie, and Marrie was born with cerebral palsy.  I got to know her last year at Partners in Policymaking, and I got to see the person behind the body that doesn't work quite right.  I've never experienced Marrie-without-the-disability, but I can see past it now, because I got to know her.

I know, I've harped on this subject before.  The recent death of Roger Ebert got me thinking about it again, though.  Roger Ebert was disabled.  Most of us don't think of him that way, because we knew him before he had a disability.  He was a person-without-a-disability first. 




Cancer took away a lot of his face and his ability to talk, but thanks to modern technology, he still had the ability to communicate.

In this video, Roger explains with heartbreaking personalization why society is so uncomfortable with living, working, and playing alongside people with disabilities:

"It is human nature to look at someone like me and assume I have lost some of my marbles.  People talk loudly and slowly to me.  Sometimes they assume I am deaf.  There are people who don't want to make eye contact.

It is human nature to look away from illness.  We don't enjoy a reminder of our own fragile mortality."

"We are all just one banana peel away from joining the disability movement."
(I heard this for the first time at Partners in Policymaking, but if you Google this phrase, you'll find it attributed to several different people.)

 

When you hear about battles for legislation to help people with disabilities, think about Roger Ebert. Think about Marrie and Jack.  And watch your step, literally and metaphorically.

Making Friends

The other day the boys' class went on a field trip to the zoo.  I agreed that Zack and AJ should go, because they love the zoo.  It's a place of familiarity and comfort for them.  Chances of success were great.  I went along, too.

Afterward, the para who came along to help told their teacher back at school that the trip went great.  Their teacher was thrilled to hear it.  I thought it went fine.  Nobody had any meltdowns, nothing terrible happened.  Nothing amazing and fantastic happened either.  It was fine.

The class was broken up into groups of three, each with a parent volunteer assigned to them.  And they all sort of roamed the zoo individually. We saw a few of them here and there, but there wasn't much interaction with the class.

For the most part, this was just another day at the zoo, except I had the para along to help.  And she was very helpful.

There is one boy in their class - Evan - who has befriended them, sort of.  We ran into him a couple of times during the field trip and he came right over and embraced Zack.  I was really surprised Zack tolerated it, but he seemed used to it.

Other than that, we had virtually no interaction with the other classmates.

This article from the Huffington Post makes me think of events like the field trip to the zoo, and how little contact there seems to be between the kids in the neurotypical class and my boys.  Forging relationships between children with special needs and children without special needs is tough all over.

A couple of weeks ago at Partners in Policymaking, a speaker who has an older brother with intellectual disabilities commented about how when he was growing up, every time he'd say he was going "out to play," his parents made him take his brother along.  In time, all the neighborhood got to know his brother and became his friends and caretakers.

Often when Aliza puts on her coat and announces she's going to the neighbor's house to play, I look at the boys, and sometimes AJ is looking at her with some wistfulness.  I think.  It could be me, just wishing they could go out and play with kids as easily and naturally as she can.

I can't let the boys go out with Aliza alone.  But maybe I should go out with them, more often.

This Great Idea I Have for a Class to Teach Acceptance

The antibullying movement is so strong lately.  And that is a great thing.  I am happy kids are being taught that mistreating each other won't be tolerated.

But I have an idea how to reduce the tendency for kids to pick on each other in the first place.



There ought to be a mandatory class for elementary students.  Something called Awareness and Acceptance.  Something to teach them to accept people that are different from them, in any way.  Something to show them how to interact and behave humanely.  To teach empathy.


I guess it would fall under the category of sociology or communication.  That, and maybe health.

And the special needs kids all need to be in that class.  Sitting right next to the typical kids.

No, not just next to them.  Interspersed through them.  No kid with special needs should be sitting next to another kid with special needs.

And maybe once a week, there's a seating rotation.  Something to ensure that everyone sits next to everyone else, at some point during the length of the class.

And it needs to be a whole semester long.  Not just a special all-school rally, one afternoon, in the gymnasium.  These kids need to be forced together in a classroom every single day for a whole semester so they really get to experience each other on a personal level.

Sort of like Partners in Policymaking is teaching me to be more aware and accepting.  Because it's not necessarily my fault I don't know how to talk to the woman in the wheelchair with such several cerebral palsy that she constantly makes odd body movements and is almost impossible to understand when she talks.  I've just never in my whole life been in such close proximity to people with those kind of disabilities.  At least not regularly, and often enough to get used to them.

I mean, I'm going to forgive myself for my uneasiness.  I think it's only natural to be uneasy around the unfamiliar.  But I'm working on it.  Every time I see her, I'm a little more comfortable with her.

It makes me wonder how different I'd be, if I'd grown up personally knowing some people with disabilities like her.

Which leads me to wonder how different our whole world would be, if everyone did.

The RIGHT Things to Say to Parents of Special Needs Kids

I was volunteering over at Aliza's school the other day during lunch, and I noticed that the special needs kids all sit together at one table.  There are a lot of deaf/hard of hearing kids and they were all signing to each other.

One girl was in a wheelchair.  She sat by herself for quite awhile.  There were other special needs kids at the table, but not right next to her.

After only two months, Partners in Policymaking has already changed how I see situations like this.  That girl in the wheelchair should have been sitting at one of the tables with all the "regular" kids.  Why should she have to sit at a table almost all alone?  Why couldn't she be pushed over to one of the other tables, where she might have a fighting chance at communicating with the typical kids?  And where the typical kids could get to know her?

This is exactly why the typical public doesn't know what to do or say around people with disabilities.  Because they've been segregated.

I've been thinking lately about how people (including myself before being a special needs parent,) act around people with disabilities.  What they say and how they behave.

There have been numerous blogs, articles, and Facebook statuses about what NOT to say to parents of kids with special needs.  Those sometimes painful comments made by usually kind-hearted and well-meaning friends and family and acquaintances.  You know the ones I'm taking about:

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I don't know how you do it!  I could never do all that you do!

(As if you'd just return your own child to the hospital, if he or she had some special needs.  There are no takebacks.  None of us is doing all that we can for our kids because we are special.)

It could be worse, he/she could have ______________ .

(fill in the blank with whatever specific special need the child does not have.)

God won't give you more than you can handle.

(So God doesn't think much of your parenting skills, then huh, since he only gave you neurotypical children?  I know that is smart-alecky, and I'd never say that.  There just is no way to respond to that, because to me it feels like you're saying "buck up, you lazy bum.")

All he/she needs is a good spanking.
(No one has actually ever said this to me, but I know it's a common one.  Some people think children with behavior problems are just lacking the appropriate discipline.
You cannot punish away a disability.)

and my personal favorite.....

You are a saint!

(Right!  That's me!)

(ok those who know me personally, you can stop laughing now.  I mean it.  Now. It's not THAT funny.)

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I know from personal experience that these phrases don't make most of us feel better.  I understand where you're coming from, though.  I know people are just trying to be nice and friendly and supportive.  10 years ago I'd probably have called myself a saint.

But now that I have some experience as a special needs mom, I'm going to do a little public service.  I'm going to provide a list of things that are not only Okay, but in fact are Fabulous, to say to a parent of special needs kids (or to their children).

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"How's the family?"

 (It's very simple.  Ask how things are going, and then take the time to listen to what I tell you.  Ask questions.  It's better to ask than not to ask, and risk me thinking you don't really give a crap.)

"I'd love to get the kids together for a playdate sometime."

(And then actually try to make that work.  It's not easy to fit in around our therapy schedule, but if you make the effort, I'll be so very appreciative.)

"__________ (insert child's name here) did so well today while we were together!  He/She did _________(insert examples of the things the child said or did that show progress).  And it was great to see him/her!"
(I love when you notice my kids' progress.  It shows that you pay attention to them and are aware.  I think sometimes you're afraid to notice the good things because it might amplify the bad or the "different".  Let me tell you, the bad/different is already amplified to me, 24/7, you can't make that any worse by pointing out the positives.)

"Hello, (insert child's name here).  How are you doing today?  Are you having fun?  It's so good to see you -- how about a high five?"

(Don't be scared of him.  Actually talk to the kid.  He may not respond appropriately.  He may not respond at all.  Don't that let disuade you, talk to him anyway.)

(And if he/she does respond appropriately, pounce on that with more attention and praise.)

It's pretty simple really.  Just don't ignore us.  Having children with a disability really shows you who your REAL friends are.  I'm fortunate to have some really, really good ones, as well as a close, supportive family.  In fact, this list of GOOD things to say is from real life - these are things my own friends and family have said or done at one point or another.

If you are cringing because you recall yourself saying the examples of what NOT to say..... it's okay.  Don't beat yourself up.  I understand the sentiment is more important than the words themselves, and that your hearts are in the right place.

But I also think that people don't say the right thing because they don't know what the right thing is.  People with disabilities have been isolated and segregated most of our lives.  Most of us just don't have experience in communicating and socializing with people who don't behave in ways we think are "normal."  I want to help bring us all together.

It's pretty simple.  Just

1.  ask questions,
2.  talk to us and to the kids,
3.  and point out the GOOD!

What if? Disabilities thru History and the Lucky Breaks We've Had

The Partners in Policymaking class this past weekend got me thinking about chances.  We have been learning about how people with disabilities have been treated and viewed throughout the history of humans.  Disabled people were shut away, if not just killed outright, up until fairly recently.

Up until the 1970s parents of special needs children were routinely told that things were hopeless.  They were encouraged and in many cases, instructed to put their children in an asylum.

Where they weren't given any treatment or therapy.  They were barely treated as human.

You couldn't really blame them.  It was a matter of lack of knowledge.  People didn't understand that with the right types of assistance, people with disabilities could be productive members of society.  In some cases, they didn't even recognize disabled people as human.

It made me start thinking about how easily it could have been different for us....

Our pediatrician was the first to notice something wasn't quite right with the twins. 

She sent us to the Early Childhood area of our school district, and to a neurologist.

Early Childhood began occupational therapy with the boys while they were still babies.  They also showed us how to get in touch with a county worker.

The neurologist ran tests that diagnosed the boys with Fragile X Syndrome.  He sent us to a genetist and behavior specialist.

The behavior specialist got us started on some medications and sent us to Courage Center for speech and occupational therapy evaluations.

Courage Center evaluated the boys' delays and reported back to us - your boys can learn, they said.  We can teach them.

Almost everywhere we went, we did what we were told (the one exception I can think of is the sleep clinic, which is a story I'll tell another time.).  We did what we were told, just like parents 40 years ago were tempted to do and often did.

Nobody said, there's nothing we can do-- put them in an asylum.

Not sure what I'd have done if they had.

Temple Grandin's mom didn't do what they told her to.  And look at what an amazing, productive person Temple has become.  But her mom was a renegade.  People thought she was batty.

I'm not so sure I wouldn't have decided that institutionalization was the best thing for my boys, had these trusted professionals told me it was.  I like to think I would never have done that.  But had I lived and had my family during the time when that was the norm..... I don't know.

I wonder if parents of adults with autism everywhere look at Temple and wonder, what if I'd bucked the system too, and worked with my kid?

Me Being Political - PIP

I started Partners in Policymaking this weekend.  Every state but Vermont does a PIP class and it started right here in Minnesota, 25 years ago.

It's a government program that trains us to fight for government policies for people with disabilities.  In other words, the government is teaching me how to fight the government.  How awesome is that?

Classes are once a month on a Friday and Saturday, for this whole school year, ending with a big graduation in May.  In March our class will go to the capitol for Disability Day, which I did this past spring, but I felt like a fish who'd flopped out of my little glass bowl.  Maybe going with my PIP class this coming year will make it less awkward.

Anyway, Friday, the very first day, the first thing they did was shock us into realizing how badly people are needed to work to promote legislation for people with disabilities.

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it?  Imagine if you had to sit through story after story after story for several hours.  My stomach turned over about six times.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history.   Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect.  Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

So we were all emotionally smacked upside the head.

Suffice it to say, it wasn't light entertainment.

It's going to be grueling.  But I have a sneaking suspicion this may turn out to be the most valuable schooling I've ever gotten.