The Dealer

picture of a hand holding a pen, hovering over a form (paperwork) and the words "and what do you do?" overlaid.

“And… what do you do?”  The Financial Planner was filling in the forms. We have been thinking it is time to get serious about our finances for years and now we finally are. The guy had already discussed my husband’s occupation.  Much head nodding and respect. And now it was my turn. The field for my occupation was empty, his pen hovering over the space.  I hesitated, and he filled the awkward pause with a mumble about how being a full time housewife is job in itself. I hadn’t said anything yet. I never use that term to explain what I do. Never have. I’ve always put my profession in the box.  Wife is my marital moniker.  Not my profession.

My profession has just slipped out of my grasp.
Teaching. Being sick, I haven’t been able to do the required number of hours in the classroom to maintain my teacher registration. So now, I can’t even say “I’m a teacher”.  I know I am bleating, but it is one of those owies that still stings.  I have the qualifications, the experience, the boxes of treasured thank you notes from my students, a cupboard in the garage that holds the last vestiges of my classroom souvenirs.  According to our registration board, it is not possible to teach well if you have been out of the classroom for as long as I have.  Except that I never really left it. I’ve been relieving and doing part time roles wherever I can during that time.  It’s just not ‘enough’.  I would need to do spend thousands of dollars I don’t have to re-train; if I want to use that degree of mine ever again. Relief teaching was a flexible and chronic-illness-friendly way, for me to contribute to to our income and to society. I worked when I could. It is such a shame that this is now out of my reach.  I miss it.

I looked at that financial planner and searched my brain for something he could put in his box. I explained that I can’t teach at present, but I do write.  That my income is small, and comes from bits of writing I do for various places and the board from our two home-stay students. I didn’t tell him that I am a full time housewife because I am not. If I were, I might not have needed to brush the crumbs away from the table before he sat down with his folders, papers and questions.

He wrote ‘housewife’.  I imagined he thought ‘…and not a very good one’.

I wondered why that question and his answer made me feel so bristly; why I feel shame about not being able to list my profession. I thought about all the lofty housewifely achievements I don’t manage and felt guilty about the state of my home.  I felt that sinkish feeling you get, watching the well world go about it’s business and wishing you had the words to explain just how much hard work it is, dealing with being sick. Dealing with being sick and all the expectations from self and others. Dealing with being sick and losing your sense of purpose, your profession, your image, your income, the defining characteristics of your well self.

The things that make you feel good about yourself.  It can leave you feeling a bit shit.

What do I do?

I deal.
Put Dealer in that box, Mister.

The Dealer, dealer, deal, deal with, make a deal, deal with it.  Dealer.  The Dealer.

Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

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When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

Missing Persons

This is not my usual kind of topic.  But I felt compelled to write about it.  I hope you will read it, it matters.

don't forget about us

Missing Persons
When we first got satellite TV, I spent a disturbing night, up until late, watching a documentary on the Crime channel.  It caught my interest because I recognised the picture they flashed up of a girl I had seen on the news some weeks earlier.  I was deeply distressed when I watched the news report about her imprisonment in a room of the basement in her childhood home.  Nobody knew she was there apart from her kidnapper. It had disturbed me greatly.  So when I saw her face, my thumb paused on the button of the remote.

And I paused, too; I watched.  I sat, transfixed with horror as all the awful facts of her incarceration were laid out.  Then, other cases.  Another German girl.  Then, two more girls, held captive for years in a dugout in Russia.  And Jaycee Dugard, kidnapped and held in plain sight. The stories horrified me; the victims astounded me.  Such inner strength, such survival, against odds that must have seemed hopeless.

And it struck me as I watched, that this kind of documentary, this kind of channel, dedicated to the crimes people have committed… surely we should be concerned about this?  There it is, all laid out for the sociopaths and psychopaths of the world. All the information they could ever need?  A how-to-guide for abduction, kidnap, subjugation and torture.  A twenty-four-seven feast of human horrors.  And not just this kind of crime.  Every kind of crime. The TV is full of it.  Whodunnits, forensic science and murder shows, action thrillers, bounty hunters, drug lords, pimps and con-men. Why do we have these channels? I ask myself, why do I watch, when I do? I am so disturbed I have nightmares, but still, there are times when I watch.  It really concerns me.

Some of the people who watch, regularly feed their brains on this diet of destruction. If they are people with violent thoughts and desires, it must be like an endless drug supply of their favourite hit.  Until the 2D images are not enough.  Then what?  Why do we keep supplying this drug?

Then, just recently, another documentary flicked across my screen as I was scrolling.  This one about the three girls in Cleveland, held captive, tortured and all but destroyed, for ten years by Ariel Castro.  I watched the policemen talk about the case.  I heard the neighbours, exclaiming in disbelief. I saw footage of family candlelight vigils, the broken faces of mothers and fathers whose children were lost.  It honestly made me want to look away.  It’s hard to absorb the pain of that loss in the face of another mother. It is an unthinkable torture they endure, too.

Why do human beings do these things to each other?  Why are some people so hideously broken that they must break others?  Can the cycle ever end? Will no one stand up and call for less of this violent education on our screens, in our living rooms, one click of the remote away?  What happens to all those unsupervised, under-parented kids who watch this stuff? And what about the computer games, so hyper real your brain is tricked into responses similar to real life.  Environments where car theft, rape and criminal activity are the mainstays of the game? I don’t understand where it is all going, I don’t want to.   But it worries me sick.  Does it worry you?

I have read a couple of the books written by survivors of human slavery. Tonight I finished the second. Their stories are terrifying, heart wrenching, and also inspiring.  But I was struck by the similarity in both Jaycee Dugard and Michelle Knight’s stories.  For both of the perpetrators, a diet of extreme porn and crime channel television were significant interests.  Are we paying attention to these things?  Do we care?  Do we dare to say; not here?  As mothers, wives, women and ultimately, the nurturers of all the babies that enter this world, when do we say ‘enough of these images, these ideas, this sickness’?

Our missing persons numbers continue to grow.  From tiny little ones, childen, adolescents, young people.  Countless souls, unaccounted for.  How many are trapped and needing our vigilance.  Have you ever googled ‘missing persons’ in Google images?  It is overwhelmingly distressing. Do you know your neighbours?  Do you listen for disturbing sounds?  Do you ever call the police?  Do you share and circulate the pictures of missing people on Social Media, or do you look away?  Click away?  Try to pretend it isn’t happening?

I saw this little guy again on my newsfeed the other day: he’s still missing.  And I am ashamed to say that I clicked away.  After staying up tonight to finish reading Michelle Knight’s book about her kidnap ordeal, I resolved to stay up a little longer and write this. And to post his face here. He is only one of so many.  Let’s not look away from their faces anymore.

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Want more information about missing persons?

Go to the NZ Police Missing Persons facebook page.  Receive notifications and spread the word.  You can find it here.

Are you in Australia?  Here is the Australian Federal Police missing persons page

The International Centre for Missing and Exploited Children (ICMEC) is a global movement to promote the safety and well-being of children.

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and finally, some words from Michelle Knight herself.
“for now, the only kind of sense I can make out of everything that has happened is this: we all go through hard things.  We might wish we didn’t, but we do.  Even if I don’t understand my pain, I have got to turn it into some kind of purpose”

And she is.  Michelle is putting her life back together and helping other people and children who have been victimised.  Her story is horrific, but her attitude blows my mind. What an amazing survivor she is.

My heart goes out to all those still missing persons and their families.  May they all get the chance to be free again, just like Michelle.  And may we remember not to forget them as we go about our daily lives.

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These books are difficult reads. They make you want to look away. Reading them will make you stop, to cry. To catch your breath.  To shake in your boots. You may have nightmares or lose sleep.  They are terrifying tales and emotionally raw, real stories.  I certainly didn’t enjoy reading them, but I am glad that buying them will contribute to the income of these girls. And I hope that their stories will help us to do something about the welfare of our vulnerable, disenfranchised young women and children in society.

4 Ways to Better Medical Literacy

4 ways to better medical literacy
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A couple of years ago, I was at a function.  I was talking to a doctor acquaintance about life, the weather, and Dysautonomia, as you do. Well, when you are me, you do! I never, ever pass up an opportunity to answer questions about Dysautonomia.  Because the more people who know; the less people will suffer through years of mis-diagnosis and lack of understanding. If knowledge of this spreads through the community (both the medical community and the general community) there will be greater understanding towards people who suffer from it. It’s one of my missions.  😉

This guy, like many doctors, was a very intelligent person.  He asked probing questions, wanted to know who we’d seen and what the current situation was. He was sympathetic about the road we had travelled. He mused that ‘medicalised’ people like me were sometimes seen by doctors as a concern, especially when they look well.  Looking ‘well’ is a bit of a feature of Dysautonomia, so not something we can change. I was interested in his reference to ‘medicalised’ patients.  The term is not something I had encountered before, or heard from others about.  The attitude he spoke of was familiar to me, but not the expression.  Have you watched a doctor ‘think’ this before?
A patient who talks the talk? Who has been googling? (insert eye roll)  Could it be a case of somatisation?

Somatisation is when people believe something is physically wrong with them for which there is no definitive evidence. Psychosematic illness.  Hypochondriasis. There are a range of psychiatric disorders which follow this pattern.  Sadly for people with Dysautonomias, many of the symptoms commonly present in somatic disorders are like our own.  Dizziness, chest pain, abdominal problems.  This is why for many people with Dysautonomia, the road to diagnosis may have included earlier mis-diagnoses of anxiety, depression or somatisation before further investigations uncovered the facts.

Recently, the term ‘medical literacy’ came up in my readings.  It reminded me of that social encounter with the doctor and his word ‘medicalised’.  I thought I would look into it, because people like myself, who have been ill for a long time, do develop a different type of jargon to the average patient.  We use the correct medical terminology for things, because it is the most efficient way to explain what has been going on.  Especially when consultation times are squeezed, fast forwarding through all the translations between doctor speak and layman’s terms, is practical.  Also, have you noticed how many letters there are in medical words?  Phew, acronyms were invented for a reason!

We also talk with one another online. Among the patient community, the use of acronyms and medical jargon and abbreviations is commonplace.  So much so, that new members take a while to learn the lingo.  For the newly diagnosed Dysautonomiac, to become medically ‘literate’ means incorporating a knowledge of the autonomic nervous system, the various types of Dysautonomia, the range of treatments or medications used for various types (and how they work), recent research findings, the big players (in terms of doctors and medical institutions) and an understanding of the very wide range of symptoms that can be implicated in our conditions.

In New Zealand, ‘Health Literacy’ is the term we use in place of Medical Literacy (I believe the latter is an American term).  The Ministry of Health’s report into health literacy in this country defines it as:
“the degree to which individuals have the capacity to obtain, process and understand basic health information and services in order to make informed and appropriate health decisions”
(Kickbusch et al., 2005; Kōrero Mārama, 2010)

Just like literacy with language, being ‘literate’ in a medical, or health care, sense, means being able to respond to the data provided to you in an analytical way.  Literacy really means being able to make sense of information in context.  For people without science based or medical degrees, it can take some time!  For me, learning what was wrong with me felt like floundering in a morass of confusing information; I was at a loss to know how to even begin to ‘make sense’ of my diagnosis.  My cardiologist could tell me about what was happening to my heart, but this was only part of the bigger picture …and it didn’t include why it was happening to my heart.  My artsy brain wanted the philosophical lowdown! Over time, I have assimilated so much information.  There is more than just the condition to understand, there is also the wider health system, the politics of the consulting room, the process by which your needs are met and the differences between our health system and that of our fellow patients overseas.  I’ve seen countless conversations in various patient groups, where good information is redundant, simply because it doesn’t apply to the way our health system works here.  It might relate to my condition, but not to what is possible for my treatment.

All of these factors can be so daunting to a newly diagnosed Dysautonomiac, or anyone with a chronic, rare or invisible illness.  Developing this ‘literacy’ is crucial to your health plan. Simply having the jargon without the contextual understanding will compromise your care.  Particularly if doctors see you as a well-looking ‘somatic probability’ just because you can ‘talk the talk’.  Your use of medical terms must be accurately supported by a contextual understanding, analytical thinking… a fully literate comprehension of the subject at hand: your health.  This is a key success component to getting the help you need from the professionals out there who are qualified to help you.

Here are four ways you can improve your health literacy:

Ask questions
Don’t be afraid to ask.  A specialist recently mentioned Occam’s Razor to me, assuming that I understood the reference.  I didn’t.  It’s a med school 101 reference.  I was confused, so I said “Can you explain?  I don’t understand …Occam’s what?”.  Occam was a monk a very long time ago who put forward a problem solving principle: “among competing hypotheses, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove correct, but—in the absence of certainty—the fewer assumptions that are made, the better”. (thanks Wikipedia for saying that better than I could remember it).  He was explaining why, even though I had recently discovered I have a high titer (often present with another auto-immune neurological disorder, Stiff Person’s Syndrome), the one he thinks I have (Pandysautonomia) is more likely to be what is wrong with me.  Asking is the short cut to the understanding you need to have, particularly in discussions with intellectual giants.  In my experience, most doctors like to be asked questions, particularly for clarification.

Read all about it
Use Google and Google Scholar, sign up for newsletters run by organisations who specialise in your diagnosis.  Use the excellent resource websites that are proliferating on the web, many have sections full of pertinent research documents and medical journal articles. Follow the facebook pages of your not-for-profit organisations; timely information is often added, particularly after large symposiums where all the experts gather to discuss their ideas. Search for blogs written by people with your condition.  They will have access to information too.  Read it all, even if you don’t understand it.  If you like print copies, print things out, highlight, circle terms you don’t understand and find their definition.  If you read something scary, suspend your judgement about its pertinence to you until you have discussed it with your doctor, other patients in your support group, or until you have identified the relevance of what you are reading.  There is a great deal of pseudo-science out there that can trick unsuspecting readers.  Run it by someone with more knowledge than you before freaking out.  😉

Find your Tribe
Facebook and the internet abound with groups, forums and news boards  that bring people with the same conditions together.  Look for groups with a strong set of user guidelines.   Read them and see if you agree with their code of conduct. There are some really awful groups where bickering and mindless trolls like to stir the pot.  Avoid those.  If you find yourself in one, leave.  There are much better, well run groups of like minded people out there.  It took me a long time to find a group that I consider to be responsibly administered.  When you find your ‘tribe’ you will learn a great deal more from them than from any other source. The experience of other patients is invaluable, particularly with a condition that is not common, or not commonly understood.  Finding your geographically relevant tribe is good too, because then all of the information will relate to your experiences.

Delve into your Data
Get hold of your medical records.  In New Zealand you can request these from your GP and your District Health Board.  Organise them into a file and refer to them. Examine your results and look for patterns.  Knowing (for example) what your iron levels or heart rate has been like over time means you can discuss these things knowledgeably with your doctor.  Knowing ‘thyself’ also helps you to see if there are any trends or significant changes in your condition.

Why does it matter?  If you, like me, suffer from a condition which is poorly understood by many in the health sector, being your own advocate, managing your own chronic condition and taking the leading role in your own health plan will be necessary.  Without strong health literacy, the likelihood that you will be able to take this responsibility on will be lower.  Not sure about that?  This is what the Ministry of Health had to say about people with poor health literacy:

I found this at www.healthliteracy.org.nz
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The only person who will ever care about managing your health plan properly, is you.
Literally.

 

Kia Kaha. Stand Tall.

Today is International Day of People with Disability.

It’s a day for celebrating difference, for acknowledging ability.  It’s a day for shouting out achievements from the rooftops.  What a brilliant group of people live in the category of ‘People with Disability’.  As I get to know more people in this new community of mine, I am staggered.  I wonder if you are aware too?  When was the last time you interacted with someone of differing ability?  Did you feel strange? Did you wonder about who they are?  Did you get beyond the difference to see the similarities?

I was walking through a group of parents at my son’s school the other morning.  I have only been walking with a cane this year, apart from it, my disability is largely invisible.  I have a neurological disorder that makes it difficult for me to stand for long.  Getting around is increasingly more challenging. I use the cane for balance and it’s built in seat as somewhere to perch when the dizziness overwhelms.

“MAKE WAY FOR THE DISABLED LADY!”   my son yells out, like a town crier.  I cringe.  I don’t like to be looked at, at the best of times.  I felt at once awkward and neon lit.
“Zed!” I admonished.
“What?!”  He looks at me, his eyes wide.  He grins.  
“But you ARE, Mum! I’m just getting them up to speed”.

I look at his face and think about how simple it all is when you are seven. How simple it really should stay.  I think about how adulthood and social stigma and self-consciousness and the media and social norms all teach us about what
“disability” is.

It’s time for a different conversation.  It’s time for me to join my son in getting people up to speed.  I spent last Saturday night at a function for the Be.Accessible Movement It’s the first function I have been to where I felt able to sit when I needed to, able to be real about how I was feeling without it dampening the mood in the slightest. There was room in that function hall for difference.  No questioning looks, no awkwardness.  I was not ‘other’ but, ‘another’. There were genuinely fantastic people to meet, fast connections; no barriers.  It was a revelation to me.  I wish that all of society could function this way.  And I believe it can.

If I can make a difference to you, if you can make a difference to someone else.  If making a difference is simply in noticing the sameness within difference, we’re on our way.

This beautiful verse crossed my path yesterday.  Perfect timing for this International Day of People with Disability.  (FYI:  the Kahikatea is a wide branching New Zealand native tree).

By Henry Melburn

E tu kahikatea
E whakapai ururoa
Awhi mai awhi atu
Tatou tatou e, tatou tatou e

Stand tall like the kahikatea
To brave the changes
Embrace one another
We are one together

Not vain the weakest, if their force(1)

I made this facebook cover this morning (feel free to use it for your facebook today).  I thought Homer’s words express what I am trying to say.  There may be differences in the ability of the “disabled”  that people consider to be weakness.   But there are strengths beyond belief. There is value and diversity and an untapped resource of brilliance in this community.  We need to start seeing all diverse groups within our society as part of the whole.  Let’s unite en force:

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Celebrating difference and acknowledging ability and making it possible for everyone to just, be.