Ruby Gets An F

It was quiet in the front room. Ruby and Sadie and their dad, Mike, were with us for the weekend and they'd all been in their dad's room watching a video on his computer. I was sitting in my chair in the front room, reading. Ruby wandered into the front room and picked up a book of puzzles that Joe and I had bought for the girls. Ruby is a kid that likes to exercise her brain. She brought the book over to me, sat down beside me, and asked if I'd do puzzles with her. I told her that I loved puzzles too and that I'd love to spend some time puzzling with her.

We did mazes.

We did word searches.

We did pick out the word that doesn't fit.

We did find the difference between two pictures.

Then Ruby chose one that looked very difficult. It was a puzzle that had a picture of a Rubik's cube kind  of structure with the top right corner missing. Then there were  all sorts of pieces to look at to figure which one fit into the space on the cube. There were at least 10 possible choices. Ruby, sitting beside me, was getting a bit tired, I think her puzzler was sore, and she glanced at the page and said. "F, it's F." I looked at it, saw that it couldn't be F and said, "Ruby, you've got to really look at all the pieces and then look at the pattern on the cube and see which will fit.

"F, it's F."

"You ought not to rush. The fun of these puzzles is puzzling out the answer, taking time to check the options and find the right one."

"F, it's F."

"OK, it time to check the back of the book and see the answer, I won't let you see the answer, I'll just show you that it's not F and then you can look at other pieces."

"You can check the back of the book, but it's F."

I flipped to the back of the book. F, it's F.

How the hell did she get F from just a brief glance at the missing piece and all the options provided? That was one question. The other was, how was I going to tell her it's F? Do I have to tell her it's F, can't we just move to another puzzle?

"OK Ruby, it's F."

"I know," she said, "Sometimes a puzzle only looks hard, you have to see if it actually is hard first."

Hmmmm.

I think I do that in my life. I look at things and think they are hard, so they are. I need to find out if they actually are hard before putting myself through hours of work looking at all the options when it's just freaking obvious that the answer is ...

F.

Joe And The Right Thing To Say

We see her virtually every day. Either we run into her in the lobby, on the elevator or we meet her as she is leaving and we are coming home. Our schedules must be very similar. On top of that, she like we, hasn't filled her life with rushing and as a result we often stop to chat. So we've gotten to know her more than most other people in the building. She is nice and kind and tremendously warm. We like her.

A few weeks ago she told us, nervously, that she was going to take the test which, if she passed, she would become a Canadian citizen. I asked her why she was nervous. She paused at the question, then told us that some people have reacted negatively when she's told them, they've made comments about her being another immigrant coming in. We shook our heads at this, this was awful and it's unCanadian as far as we're concerned. She said, when she saw our reaction, "I think it has a lot to do with racism." We talked a bit more about the test and people's reactions and then it all ended with us wishing her good luck on the test. I joked that Citizenship should be given to anyone who can make it through a Canadian winter. She laughed, agreed, and the mood was lifted.

A couple of days ago we ran into her again, in the lobby. I was having difficulty with the chair on the winter carpeting, it's different from last year and there are parts that are almost impossible to push over. She stopped and waited for me to get things right and then said, "I thought I should tell you that I passed the test and I am now a Canadian citizen."

Then Joe did and said the exact perfect thing.

He walked over to her, put his hand gently on her arm and said, "Welcome home."

She looked at him, her face beaming even as she cried, and said, "Thank you, thank you so very much."

Joe often knows the exact right thing to say, but at this moment I was not only proud to be Canadian, I was proud to live with a man like him.

When One Door Closes ...

I'll bet she closed the door behind her.

I got the email this morning. A woman I worked with many years ago, a woman who taught me one of the most important lessons of my working life, has died. I hadn't seen her for many years, I occasionally heard of her from staff who I'd run into at conferences or lectures. She is one of the many people who's name always brought a smile to my face. I'm not doing that 'the dead are suddenly saintly' thing that people do - her name, her memory, always lifted me and gifted me.

She had been referred by a frustrated group of staff. She was 'aggressive' and 'destructive' and 'impulsive'. I was fairly new to being a behaviour consultant and reading these descriptors had me on edge. I was surprised at how small she was in real life because believe me she was writ large in the minds of her staff and care providers.

Sitting to meet about her I listened about her obsession with the door of the how, with any door, any where. If someone was leaving the house, she'd leap up and run as fast as she could to the door and grab the handle and open it wide. If someone knocked at the door she'd run as fast as she could, pushing staff out of the way, to get to the door - she's open it and hold the door open with one hand and swing the other open in a wide gesture of welcome.

This was 'reinforced' by people who came in by saying, 'Wow, you are a real welcoming committee aren't you.' or 'What a great way to be greeted at the door.'

They lived in a smallish town and she'd do the same when out, when seeing someone approach a door, she'd rush to open it for them. Give them a grin and wait for them to go in. She never ran across the road, she wasn't so impulsive that she forgot the rules of the road, nor was she so impulsive that she knocked people over as she rushed to the door. The 'aggression' seemed to happen at home, if staff were in the way when she wanted to get to the door, or if staff tried, as they had, to stop her from her 'inappropriate behaviour.'

I went on a trip with them to the nearest city and had the delightful experience of watching her discover automatic door openers for the first time. She laughed so delightedly, as if she'd discovered the most wondrous of things and couldn't contain her joy! So, learning how they worked, made trips to the city such that she'd need to push those buttons for people.

After my observations had been done and I sat down to write the 'behaviour programme' I realized how nice it was to be working on a behaviour that wasn't about 'hitting' or 'spitting' or 'kicking' or any of the other kinds of aggressive behaviour that I was used to working with. Midway through the programme it struck me that this behaviour was a 'gifting' behaviour. It wasn't aggressive, it didn't have the goal of intentional hurt.

I threw out what I wrote and set about writing a teaching program for staff to accept the behaviour as an expression of her wish to welcome, her wish to assist and her wish to be helpful. Those are all wonderful qualities. We should be encouraging not eliminating these behaviours.

So.

That's what I wrote.

And that's what I got yelled at about when I presented it to the staff.

But, that's also part of the job - dealing with staff aggression.

Once they got it, really got what I was saying, they learned to see the behaviour in a new way. We noted that she wasn't taking away anything from others in the home, none expressed any interest in answering the door or opening ti for others who left. She only pushed in rushing, she never pushed in anger. Staff needed to get out of the way, invite her to get the door, and let her give what she had to give.

Simple, easy.

I came away from that with the vow to remember that sometimes what we see and what we think we see are different things.

I am convinced, convinced, that as she left us for heaven she closed the door on one world and raced to open the gates of the next.

Diversity Done Right

You've all seen those pictures of kids with disabilities sitting way off to one side when the school photo is taken. You've all read about the lack of diversity, well, everywhere. How about let's take a look at diversity done right. It's fun, it's inclusive and, I don't mean to go all Ellen on you, it's gonna want to make you dance!

for those who cannot see the video, here is the link:  http://youtu.be/0EUEg7kd6Cg

There is no dialogue, the teacher and students are dancing to a song called Uptown Funk.

Conference Information: Trauma Informed Care

For those interested, Vita Community Living Services is hosting an exciting and powerful conference on Trauma Informed Care.

March 24th 9:00 to 3:30

Cost: 50.00$

Trauma and People with Intellectual Disabilities: Support Strategies for Healing and Recovery through Trauma-Informed Care

Traumatic events can happen to anyone; they are part of the human experience. Sometimes the impact of these events does not diminish over time but can result in long-lasting trauma. Some survivors may develop harmful or negative behaviours in an effort to cope with the emotional and psychological impact of their experiences. Research shows that people with intellectual disabilities are at higher risk of abuse than the general population and have often experienced events that can result in lasting trauma through frequent and/or unexplained moves, extended hospitalizations, invasive medical procedures, bullying, institutionalization, separation from primary relationships, physical restraint or punishment at various times in their lives.

When supporting someone who has experienced trauma it is important to understand the impact trauma can have on a person and their behaviour, and to provide supports that promote healing without unknowingly triggering further trauma responses. Incorporating a trauma-informed approach into services that support people with intellectual disabilities is essential to promote healing and recovery for the people we support.

Participants will develop an understanding of trauma, the impact trauma can have on individuals with intellectual disabilities, and the principles of trauma informed care. Concepts of assessment, support and treatment will be explored through lecture, video, group discussion and activities and will be further illustrated by the story of one woman’s journey through developmental and trauma services. Specific tools and support strategies will be reviewed and participants will have the opportunity to try out several of the tools/strategies while relating those to specific individuals they support.

Learning Objectives

By the end of this training participants will have the knowledge and tools to be able to:

Understand the prevalence and impact of trauma in the lives of people with an intellectual disability

Apply a trauma lens to their understanding of, and response to, challenging behaviours

Incorporate a trauma informed care approach in their daily work with people who have been impacted by trauma.

Effectively use a number of strategies to support people with intellectual disabilities in their journey of healing and recovery

Presented by

Melissa Otter is a Self Advocate and Trauma Training Facilitator who has presented at numerous conferences and workshops for staff and self advocates across Ontario. She is a member of the Trauma and Developmental Disabilities Committee of Central West Region and is a co-facilitator of the peer support group The Wonder of Me. Melissa is passionate about sharing her experiences to help others in their own journey of healing.

Cathy Kuehni is an Intensive Behavioural Consultant for Family Counselling and Support Services in Guelph. Among many things, Cathy’s role includes, walking alongside families and individuals with developmental disabilities who are in crisis, developing and practicing coping strategies with all involved; transitional support; and trauma training.

Donna Lee is a Behaviour Therapist with over 20 years experience working in the fields of developmental services and mental health. Donna has a Master of Arts in Critical Disability Studies and teaches online with Ryerson University’s Disability Studies program. She currently works at Dartmouth Adult Services Centre, as the Client Support Specialist providing behavioural support and staff training.

For the complete conference description, learning objectives and registration information please contact Rose Castronovo at rcastronovo@vitacls.org

The Bus Stop

We first spoke when he asked me a question about my chair. I thought, at the time, that his purpose in starting the conversation wasn't so much to get information about the chair, it seemed as if he saw me as another other in the coffee shop near where I live and that he wanted contact. It was like a moment of solidarity. We both are different, we don't have to be different alone. That he had an intellectual disability and I a physical one was of no importance.

Since then I've seen him on several occasions as he waits for the bus at a stop that I routinely pass a couple times a week. We always wave and occasionally, if I'm not rushing, we have a brief chat. It's a nice bit of connection. For both of us. I like the neighbourliness of it.

Then, a couple days ago, I was rushing to an appointment and I saw him standing at the bus stop. He wasn't alone. There were a group of kids in their early teens beside him and behind him. I couldn't hear what they were saying, but I could see that he looked distressed. He was IGNORING them and the way he ignored them gave them so much encouragement. That's the problem with ignoring - it's a visible response that says 'I NOTICE YOU AND I DON'T HAVE ANY OTHER WAY OF DEALING WITH YOU.'

The internal tussles, I need to admit to, of "should I or shouldn't I" and "I don't have time" lasted only a couple of seconds. I slowed up. I caught his attention. He waved as he always did. I came over to him, asking the kids to move so I could get my chair past them and stop beside him. I asked him casually how long he'd been waiting for the bus, he said that it had been about five minutes. The kids sized me up and down, decided that I wasn't an easy adversary. When they heard me say, "Well, why don't I wait here with you and we'll just chat," they took off.

I don't know what their aim was.

I don't know why they were swarming him.

I don't know if anything really bad was going to happen.

But I do know that I have a responsibility to care for the people in my neighbourhood, disabled or not. That's what "neighbour" means, at least in my dictionary.

The bus came only a couple minutes later. He thanked me for stopping to chat. I took the thanks and rushed off. I was only a minute or two late for my meeting. Which meant I was there before anyone else.

Bullying can't happen when people of good will step in and step up. Bullying can't happen when people see and take action. Bullies depend upon the inattention and the inaction of others.

It only takes a moment, sometimes, to be part of the solution.

The Ride Home

I hopped on the subway, heading home. The moment I entered the car two out of the three people who were sitting in the parking area for wheelchairs got up and folded up their chairs. The third, the one at the end, did not. She was sitting in the primary seat that allows access to the space, with her there, even with the other two empty, I cant get into the space. I ask her, nicely, if she could move so I could use the space. She takes her ear phones out, looks at me, puts them back in and stays seated.

I roll back and hold on to another rail, extremely aware that I was a bit unstable and that I was in the space of a lot of people. Fortunately for me, not her, the energy and focus in the car was directed towards her sitting in that seat. Suddenly, she began to cry, not loudly. She wiped at the tears on her face looking extremely embarrassed. We came to the next stop, I had to scramble to get out of the way of the door to allow others out and others in.

At this point a woman sitting in the next row got up, reached over to her, tapped her on her shoulder to get her attention and then pointing at the wheelchair symbol, prominently displayed, and then indicating that I needed that space. She got up quickly and moved. I moved into that space, it felt good to have a good grip and to be out of everyone's way.

I felt terrible when I saw the woman sitting there crying. I had no intention of upsetting anyone. I hadn't been rude, I hadn't made comment to her, I just moved to another space.

Joe said that he thought the tears had nothing to do with what happened.

And even though I don't understand what happened, I think that the tears were a result of our encounter, my request, her refusal.

Sometimes I want to simply ride the subway. Get on, get into the designated space for wheelchairs, and ride. Too often needing specific space, even space clearly designated, brings with it interactions. Some requiring and deserving thanks. Some requiring a bit of assertion and conflict. Some, like this one, that are just baffling.

All I want is to ride, like everyone else, in silence and anonymity.

That's all.

Unmovable Resistance

There was a crush surrounding the table. Ruby and Sadie had managed to make it up to the front to both see and touch real fossils from a dinosaur hunt in Alberta that had led to the discovery of a whole new species of dinosaur. We'd just previewed an episode of a new television show Dino Hunt so everyone was excited to see in real life what they had just seen on the screen.

As is typical it was hard for me to get to the table as people simply stepped in front of the wheelchair, such is living in that weird state of being highly visible and completely invisible at the same time. But I'm used to this so I was just slowly inching my way forward, being careful not to hit either parent or child. It was as I was doing this that I noticed two girls, I'm not sure if they were friends or sisters, but whatever they were they looked to be the same age. One was blond, the other had dark hair, both were very thin and beautifully dressed.

The blond one noticed me and leaned forward to say something to the girl with dark hair, who glanced at me while the blond continued to whisper and laugh. The dark haired girl noticed me notice them looking at me and looked away quickly. She said something back to the blond girl and a tussle ensued. The blond girl grabbed the dark haired on by her shoulders and tried to force her to turn around towards me. She met unmovable resistance.

Giving up, knowing that she was not going to be successful, she grabbed her phone and held it up to take a picture of me. Not wanting to be a young teen's Internet sensation I began turning my chair around. Before I could do so, the dark hair girl stood in front of the camera, denying the shot. This little battle continued only for a few seconds more before they were both called away by a woman who had been standing further away talking to a friend.

I do not wish to comment on the behaviour of the blond kid.

I wish to comment on the behaviour of the dark haired child.

Her behaviour is so commendable that I don't have the emotional vocabulary to say what it meant to me. Further, her behaviour demonstrated the power of 'one' to stop, to interfere with, the power of a bully. She took her role seriously, she saw wrong and she acted.

This takes courage.

Real courage.

This is a child that has the potential to grow up an into someone who will make a difference. I know that because she already has.

Today I Remember, Today I Pledge

Every now and then, in the moments just before sleep, I will remember standing in the centre of a graveyard for people with intellectual disabilities. I don't remember if I was there in winter or summer but it's always, in my mind, a cold day. One tree stood, in lonely vigil, near the centre of the land. There were no gravestones. No crosses. No markers. There was nothing there to indicate that was holy ground. Those who drove by would have seen what looked to a man standing in the middle of a small field.

The gravestones? They had been torn down and removed to be crushed and then put to industrial use. There was no one, they thought, that would want to grieve, that would want to remember. I could see evidence of this massive vandalization when searching the ground closely. Bits and pieces of gravestone could be found.

I left stunned and shattered.

First that these graves existed at all. That the institution, a huge one, which wrapped two arms around the graveyard, had been full and teeming with life. That people had been pulled from their families, pulled from their communities, and housed here. That people longed for freedom and instead ended up a few feet away, resting in a graveyard with neat graves in a row, like an eternal ward.

Then that someone, somewhere, sitting in an office writing a memo, after a meeting of other someones sitting in other offices, calling for the destruction of the markers, calling for the 'good sense' use of the material in other, more valued places.

It seemed that they counted on no want remembering, or, probably more accurately, no on wanting to remember.

Well I did.

Well I do.

Today is the International Day of Mourning and Memory.

Today I remember those who lived longing for freedom and getting, instead, captivity.

Today I remember those who while living in freedom were bullied to death.

Today I remember those who came to the community to find violence not welcome.

Today I remember those people who fought, and fought hard for the closure of buildings and and end to institutionalization.

Today I remember those people who fight against violence against people with disabilities.

Today I remember that there is work yet to be done.

Today I pledge to be part of the community of those who fight against violence and who resist the segregation and exclusion of people with disabilities.

I know today, that in that field, there is a memorial to those who were buried there. A memorial that was the result of others who came together to fight, and fight hard, for the right for people with disabilities to be remembered and to be mourned.

Being Needed Con't

Yesterday's discussion was wonderful!

Thanks.

I don't have much new to add to what's already been said, and said well, in the comments. I just wanted to acknowledge the obvious, that the 'need to be needed' or 'the need to feel helpful' are needs that exist outside the paid care provider role. I think we all need those things, I think it's part of who we are as people. I know for myself that the things that I do for others, the things that make me feel needed, are amongst the most important reasons I have a good sense of self esteem and self worth - it just plain makes me feel good about myself to be helpful, to be needed, to have skills that are valued by others.

So when the care provider said, in the scene I presented yesterday, "I just need to feel helpful," they were simply being honest with the motivation behind their action. I think we all agree that the 'needs' that need to be met here are the individual with a disability who is being supported. But I think, too, that it would have been possible for the worker to have their needs, specifically the need to feel helpful, fulfilled too. This isn't an either / or situation.

Let me explain. For a brief time when I was back in University I did some work with kids in a special school. I giggle at those words now because, whatever else it was, it decidedly wasn't special, but I didn't know that then. I found that those moments when I was able to hold back my hands, hold tight to my tongue and simply be there as a supportive presence while kids did things on their own - to be there to see their faces turn to me, glad of a witness to their success, and smile was such an amazing thing. The teacher there, who had a face that never looked kind and a heart that always was, said to me, sometime the most helpful thing you can do, is wait.

We tend to see help as an action, as something done. Anyone who works with people who are learning new skills or developing independence needs to know that help occurs when inaction replaces action. Where waiting for a bright shiny new skill to show itself and be demonstrated. Those outside this field of endeavour simply wouldn't understand the joy behind this sentence:

I went to the store with JJ today and I stood there and did nothing while he paid for it himself.

Both needs could have been met.

Only one was.

That's the tragedy.

***

I want to address a comment made by Feminist Atavar, which was picked up by others later. The question was asked, "Why did I say anything at all?" The suggestion was that my statement could have, even though I didn't intend it, put pressure on both of the others in the store line up. That comment made me pause and think, 'Why did I speak up?'

I don't know the experience of other power wheelchair users, but my experience is that with my gender, my weight, and the way the power chair increases the sheer 'bulk' of me that people often feel pressure for some odd reason. As an example, on going, underground, between two halves of a mall, there are two ramps on either side of a step down walkway. When I appear at the top of one and look to see if it's free, it's narrow so only one person can use it at a time, if someone sees me up top, they nearly start running! Even people using walkers!! That's when I say, 'Don't rush, I'm comfortably seated,' or 'Take your time, I'm comfortably seated,' and typically people then slow down.

So when I'm in a line up and someone sees me behind them, I say it as kind of a joke, but also as a signal that it's OK, I'm really not in a hurry. I had hoped that was what happened here in this situation. However, I can see where maybe it wasn't helpful.

That's what I like about these kinds of discussions - I'm asked to think differently or more deeply - which is always a good thing.

***

Thanks to all who participated in the comment section!

Essay Question: What do you think?

This is essay day on Rolling Around in My Head. I'm going to give you a brief scene, which I witnessed a couple days ago, and I'd like you to respond in the comment section. I'm doing this because I'd like to hear other's reactions before I weigh in with my own. So, here goes:

He was being very methodical, and, in truth, taking a bit of time. I was in line behind him, with no one behind me. I was not in a rush, and said so using my favourite line in these circumstances, 'Take your time I'm comfortably seated.' The support worker with him watched with growing impatience and then reached over, took his wallet from his hands, retrieved a bill from the wallet and handed it to the clerk. The clerk looked, as I did, a bit shocked.

The young man said to his staff, "I can do it on my own."

The staff said, with a laugh which seemed intended to lighten a suddenly tense situation, "I know but I just need to feel helpful."

OK, Discuss!

Preparing for the International Day of Mourning and Memory

I arrived early, and that's why I began my day mourning a man I'd never met.

Years and years ago I was doing a lecture tour in the United States. One of the stops was a large institution, the size of a small town, where I was going to be lecturing in the chapel. I like to arrive early and did so that day. There were no cars in the parking lot save one parked in the space reserved for the pastor. I pulled along side and parked.

With my stuff clumsily gathered in my arms, I entered the chapel. My footfalls echoed as I moved from the outer door to the door to the sanctuary itself. When I did I noticed a coffin, set on a pedestal, just in front of the altar. I immediately felt like I was intruding, even though the room was empty, save for the coffin. I sat at the back and waited, but not for long. A short, chubby woman entered from a door just off the front, wearing robes and a sorrowful face. She looked up, noticed me, smiled in acknowledgement. She made her way to me.

She welcomed me and asked me what my relationship was to the man who had died. I told her that I was early for the lecture I was to give in that space in just over an hour. She said, "I was really hoping that someone would come." She invited me to come to the front and be there as she conducted the short service. I followed her up. She showed me a picture, laying on the top of the coffin, of the fellow who had died.

It was one of those pictures that, once seen, are not forgotten. It was an old picture, he was crouched on a bench in a large open ward. Wearing only pyjama bottoms, he was impossibly thin. One arm was wrapped around his waist, the other was held forward, a cigarette dangling from his fingers. He did not look at the camera. It wasn't the picture of a person, it was a picture of despair and neglect and loneliness.

The service began. It was, as she said it would be, short. It ended with her placing both her hands on the coffin and bowing her head in deep prayer.

I found myself crying.

January 23rd we mark the "International Day of Mourning and Memory" where we remember those who spent their lives in institutions and those who fought for the right to live in the community, to live with freedom.

It is a day where you are invited to spend some time thinking of the journey, the struggle, the fight for civil liberties and freedoms for people with disabilities and recommit yourself to the vision of a world beyond inclusion, a world of welcome. It is a day where you are invited to spend time talking with others about our history; of congregation and segregation; of bullying and violence. It is a day where you are invited to remember those, you personally remember, who never lived long enough to be free.

Martin Luther King's Diverse Legacy

Today is Martin Luther King Day in the United States. In celebration of his legacy I would like to share a video created, last year by people with disabilities, in honour of the many lives and many movements that have bee influenced by Dr. King:

The video has no dialogue, instead 'We Shall Overcome' is sung throughout:

We shall overcome, we shall overcome,
We shall overcome someday;
Oh, deep in my heart, I do believe,
We shall overcome someday.

The Lord will see us through, The Lord will see us through,
The Lord will see us through someday;
Oh, deep in my heart, I do believe,
We shall overcome someday.

We're on to victory, We're on to victory,
We're on to victory someday;
Oh, deep in my heart, I do believe,
We're on to victory someday.

We'll walk hand in hand, we'll walk hand in hand,
We'll walk hand in hand someday;
Oh, deep in my heart, I do believe,
We'll walk hand in hand someday.

We are not afraid, we are not afraid,
We are not afraid today;
Oh, deep in my heart, I do believe,
We are not afraid today.

The truth shall make us free, the truth shall make us free,
The truth shall make us free someday;
Oh, deep in my heart, I do believe,
The truth shall make us free someday.

We shall live in peace, we shall live in peace,
We shall live in peace someday;
Oh, deep in my heart, I do believe,
We shall live in peace someday.

It's Not A Gift It's Violence

Yesterday was the first day in a long while that it seemed that the cold could be effectively battled by layering and layering and layering our clothing. It had warmed to -8, which compared to recent days seemed even slightly warm. We had been keeping our excursions to just the local neighbourhood so we were in need of a really good shopping at the supermarket. A supermarket that had been determined to be 'out of range' in the cold. We got up, got dressed and headed out.

It felt nice being out and, even though the wind made the temperatures feel much colder, we were simply enjoying being together and walking down Yonge street. We were only one traffic light away from the store when it happened. We were waiting, with a bunch of other people for the light to change. A man, nicely dressed and well appointed, coming towards us from the west saw me and hurried forward. Never a good sign. He got to us a few moments before the light changed. His rush had drawn the attention of others who had also been waiting.

On arrival, he lifted his hand, palm out, and said a blessing over me. Startled looks came my way from others in the crowd. Kindly looks went his way. It was like they thought that this nice man was giving me a gift, a gift I obviously needed.

I choked down embarrassment and quickly sped away from him when the light turned.

A number of people have commented in the past that I can be churlish and ungrateful to people who are just being nice.

Even so, I hated what he had done.

Hated it.

I felt assaulted by his blessing.

I felt diminished by what his blessing meant and assumed.

He saw me, in a crowd of many, as the one person who needed a blessing from God. Here I had been, feeling blessed to be out, with Joe, enjoying the day, and here he was seeing me as a person who was in desperate need of a blessing intervention. His assumption was that my status as a disabled person was one in which made me perpetually in need of blessings from others. The fact that he centred me out from everyone else as the one in need of a blessing meant that he saw me as less worthy and more needy than anyone else around me. His gentle voice and the brief prayer he spoke called God down to bless this "poor man in his struggles" may have seemed kindly to others but it was a kick in the gut to me. I am NOT that. I AM NOT WHAT HE SAID.

I didn't do or say anything. I just endured and then rushed away. I felt somehow powerless in the face of his blessing. I felt like many victims of public abuse, terribly, terribly alone. Joe, too, said that he was so shocked that he didn't know what to do either.

He meant, I think in his own heart, to give me a gift.

His arrogance and privilege will never lead to self reflection, I'm sure of it. But if he does think about it I hope he comes to see it as I experienced it - as an act of spiritual violence.

A Tree, An Experiment, Interesting Findings

  

(photo description: An artificial Christmas tree with bright lights glowing.)

Our Christmas tree is still up.

Yes.

It is.

Pay attention to  your thoughts about this fact.

Our Christmas tree is still up.

Look inside yourself to see if you have an opinion about this.

I'm asking you to do this because I tried a little experiment this week. I told several people, throughout the day, some who worked with people with disabilities and some who do not, some people had disabilities, some did not. I wanted to see the reactions of people to this fact. I found it surprisingly easy to slip this fact into conversation. I didn't simply announce it - that would have been socially odd. No, I just slipped it in, an interesting side note to a regular conversation.

I kept some data.

I do that kind of thing.

I found an interesting little fact in my little experiment. People who had the most control in their lives were the most likely to want to assert control in mine. Care providers, random non-disabled people - like the guy in the convenience store where I buy lottery tickets, people with physical disabilities who rode the bus with me going to work - 92 percent of these people suddenly started giving me their opinion, tinged with admonishment, about when a tree should come down. Of those 57 percent flat out told me that it was wrong to have a tree up so long after the holiday season. Of those 42 percent were quite heated about it, it inflamed their tempers.

Statistically people with intellectual disabilities responded differently. While 37 percent of them responded with some form of the instruction, 'You should take it down,' the majority said some version of 'that's great.' What was interesting was that people with intellectual disabilities were amazed at my FREEDOM to have my tree up, that no one was making me take it down. 'You get to keep your tree up as long as you want?' was the kind of shocked reply.

I found it interesting that most people, who have power in their lives, felt completely free to assert power in mine and people who have little power in their lives were astonished by the freedom I had and made no attempt to admonish or direct me to do differently than I wanted. In fact of the 63 percent who didn't attempt to convince me that it's time to take the tree down, 48 percent of those celebrated the fact that the tree was up. None of the other group did this.

This isn't very scientific, it wasn't a huge group, but it was interesting. Those with power, assert power, those without power did not. Those who thought they 'knew better' felt completely free to have an opinion and to feel that opinion was valid and needed to be shared, sometimes forcibly. Those who were used to the control of others, simply marvelled at the fact that I had control in my own life.

The weird thing about this, for me, is that any one has an opinion about the fact that we still have our Christmas tree up. It's something that has no effect on anyone else and simply, really, doesn't matter.

This is the problem we have in service provision. We have opinions on things that don't matter and we want those opinions heard and understood. Further, we want people to change and do things, things that ultimately don't matter, our way, the right way.

Some things don't matter.

Some things don't need your opinion.

Some things just are and as such should be left alone.

Why does anyone care about my tree in my home?

It doesn't matter.

We need to learn to separate things that matter from things that don't ... and then learn to keep our opinions to our selves while we celebrate the things that don't matter. The things that don't matter are the things that really matter to the people who do things differently.

Like having their Christmas tree up in the middle of January.

The Kindness Question

A scenario and then a question.

This is what happened:

I discovered, by accident, that sitting on the right side of the WheelTrans bus is warmer than sitting on the left side of the bus. Typically, because I'm picked up very early, I'm first on the bus, so I sit on the left side. This winter has had very cold days and I've had fairly cold rides up to work. There is a heater down by my feet, running alongside the side near the floor, but it doesn't seem to do the job. This may be because it's very early and the bus hasn't warmed up yet and the heater is still shaking off it's own morning cold.

But one day I got on the bus and someone was in that place. I sat then on the right side. Surprise! The heater up front blows warm air back to where I'm sitting and I felt it's warmth the whole ride up to work. I've requested that seat ever since. This morning when I got on the bus, I requested that seat, explaining to the driver that I like to be in front of the heater. He was good about it and strapped down my chair while we chatted about the weather and the cold temperatures that we've been experiencing in Toronto.

Soon after we left, heading to pick someone else up, we stopped at a light. The driver said, 'I've got several heating vents up here, would you like me to turn one back towards you?' I said that that would be nice. He leaned over quite far, turned the vent towards me and we drove off. I had the warmest ride I've ever had in the winter on the bus. By far.

Here's my question:

I often wonder what makes people cruel. Why people do mean things to one another. Why anger is so close to the surface for so many people and in so many interactions. What causes that? These are undoubtedly good questions. But what I've never asked myself, until today, riding on the bus, feeling warm on a cold winter day - what makes people kind? What was there about this guy that spurred him to think of a way to do something nice, spurred him to ask first before just doing it, and then go out of his way, and nearly out of his reach, to make it happen. What spurred him to do something that wouldn't have been noticed if it wasn't done or wasn't offered. What part of  his mind or heart makes doing an act of thoughtful kindness so simple and easy? How did he get this way? What makes people kind?

I notice that there are a lot of people who are doing the 'pay it forward' thing on line. They are going to do 5 acts of random kindness to five people who pledge to do the same. I haven't signed on to this scheme, even though I think the motivation behind it is a good thing. The thing I'm talking about isn't 'pay it forward' because those are intentional acts of kindness - and that's good, I'm not down on that at all, kindness of any kind is a good thing. The difference is what makes it such that someone doesn't need to sign up to be kind they just are. What makes it such that someone's impulse is to kindness? Is there a way to develop or strengthen the impulse to kindness?

I don't know.

But that's who I want to be. It is not who I am, but it's who I want to be. I want kindness not to be a behaviour I perform but, instead, I want kindness to be the way that I live.

This is the kind of thing that goes on in my mind on the way to work in the morning.

So, what do you think? What makes people naturally kind, how do they become that way? Can one develop kindness as a lifestyle?

Plain Can Be Beautiful

Part of my work life now includes translating documents and information into plain language for people with intellectual disabilities. The fact that this is now being done is a testament to thousands upon thousands of parents over many, many years who fought for the right to a real education with real outcomes for their kids. I have been witness to this over my years in doing training for people with intellectual disabilities. At one time, maybe 20 years ago, most of the people who came to my workshops were not able to read. Now, many, and very nearly most, can.

We see accessibility in too narrow a way. We see it as getting access to places. We tend not to think about it as getting access to information. A convoluted sentence with words like 'convoluted' in them can be just as much a barrier as an uncut curb. So, now, we are at the stage of making sure that information is presented in an accessible manner, like we are ramping language.

I had to do this yesterday. I had several pages of information that needed to be translated into plain language. The first thing I noticed was that the information wanted and needed was buried under all sorts of words. Words piled on words piled on words. One sentence was five lines long consisting of 60 words. That's a long sentence. I found myself working to follow it and understand the major message it was conveying only to realize it was just saying, 'Here's what we found.'

So, I set about the work. I admit to enjoying doing this a lot. It's like a word game for me and I approach it that way. I was totally engrossed by the work.

When done the first draft, I did a read of the original a read of the translation to make sure that no important points were left out, and to ensure, of course, that what I deemed to be extraneous was indeed extraneous. One more go through on the text and it was done.

Reading the plain language text, for me, was such a pleasure. I found myself taking in meaning more easily and really understanding the intent of the original text and the point of the work it represented. I'm willing to bet that if you were given a choice of reading one or the other, you'd probably go with the plain language one.

This is the radical next step.

People with disabilities have learned to read.

Now we have to learn how to write.

Pride on Display

(this video is captioned, simply hit the 'youtube' button to view it on YouTube and then  press the [cc] button underneath the video on the right side)

I was watching television the other day and, out of the blue, this Swiffer commercial comes on. I was gobsmacked, and not by the cleaning efficiency of the swiffer, but by the man doing the cleaning. He in Google searches comes up when you search 'swiffer' 'one arm.' As I searched around I found a much longer video about him and his family - turns out these aren't actors but a real husband and wife with their actual beautiful children. In the longer version he talks about how he lost his arm to cancer and some of the frustrations that came with not being able to help out as much as before.

I chose not to show that version here on my blog but you can find it by Googling the terms mentioned above. I chose to show instead the commercial that is playing on television. I find it even more compelling, though I was glad to learn more about the family in the other one, because it's just so dynamic, so in your face, so 'difference' and 'disability' proud. There's no shame here. No hiding of the arm. There's also an amazingly restrained approach to this commercial. It's more about showing Swiffer as an adaptive devise that makes cleaning easier than showing him as in 'inspiration' either because he's disabled and still doing the cleaning up or because he's a man and willing to do the cleaning up.

I openly applaud Swiffer for this commercial, and for the longer informational video. I know you are selling a product but you are also selling diversity and a unadulterated, unfiltered, unashamed look at disability. We need more of this.

Much more.

The Violence of Invisiblization

Photo description: Baynard Ruston, a 51 year old black man with slightly greying hair wearing black rimmed glasses, and a suit with a loosened tie taken at a news briefing on the Civil Rights March on Washington, August 27, 1963

I want you to be introduced to Bayard Ruston, a man who "homophobia almost erased from history". This is a man of such tremendous courage and vision and passion, a man who's honesty and forthrightness about his sexuality was remarkably brave considering he was out and honest long before the idea of 'gay liberation' had been born. There are so many sources of information about this man's accomplishments, I can leave you to those, let me just mention that in 2013 he received the Presidential Medal of Freedom:

"Bayard Rustin (posthumous)
 Bayard Rustin was an unyielding activist for civil rights, dignity, and equality for all. An adviser to the Reverend Dr. Martin Luther King, Jr., he promoted nonviolent resistance, participated in one of the first Freedom Rides, organized the 1963 March on Washington for Jobs and Freedom, and fought tirelessly for marginalized communities at home and abroad. As an openly gay African American, Mr. Rustin stood at the intersection of several of the fights for equal rights."

So, you get it, this is a very cool guy who's life and who's legacy needs to be remembered and honoured. The pressure to remove gay people from history is strong and it needs to be resisted. At all costs.

Therefore, imagine my surprise, when I went to see the movie Selma, knowing that Baynard Ruston was one of the characters who I would be seeing on screen. I wondered how he would be portrayed, I knew the story was not about him, but I also knew that he is a big part of the story, not only of Selma, but of the development of Dr. Martin Luther King's non-violent approach to social change. When the film ended without any indicator that Baynard Ruston was gay, I was OK with that. Maybe it just didn't fit into the story properly.

But.

And it's a very big BUT ...

At the end of the film, as they often do in historical dramas, they had updates and summaries of what various people went on to do or become. Bayard Rustin, whose legacy is enormous, was not one of those mentioned. He was effectively invisiblized. Oprah Winfrey, who interestingly, received the Presidential Medal of Freedom at the same time as Bayard Rustin, starred in the movie and was one of the producers - she certainly knows who he is, what he accomplished and how revered he is for managing to live well at proudly at the intersection of sexuality and race.

But he was left out.

Marginalized.

Imagine Walter Naegle, Rustin's partner of 10 years, who recieved the Presidential Medal of Freedom on his partner's behalf, who has been fighting to keep the legacy of the man he loved alive watching this movie. Seeing him on screen, in a celluloid closet, ignored. Imagine.

In a film about prejudice and about the fight for 'VOICE' for those who have been disenfranchised the producers, writers and director commit an act of violence against someone who fought for their voice and their power.

Selma is a good movie. Honesty would have made it a great one.

Cartooning Protest

Today 'Rolling Around In My Head' celebrates the lives and the contributions of those who use cartoons to make change and to challenge orthodoxy. This is my way of joining the mass demonstrations against terrorism. I found these freely on the web, if I am violating copyright please let me know and the cartoon will be immediately removed. Image description follows (thanks to CapriUni for providing these for us.)
 

 







1st cartoon -- A Martian and Earthling are at a "Universe Education Summit;" the Martian is speaking: "Let me get this straight: You label certain kids, and take them away from other kids, and call that 'special?' Then you group those kids by their labels and call that 'individualized?' What planet are you from?"

2nd: A wheelchair user stuck at the foot of a flight of stairs. A sign reads: "Way in: everyone welcome!"

3rd: A wheelchair user stuck at a curb with no curb cut labeled "PREVAILING ATTITUDES." while two able-bodied men talk about him. Man #1: Now what's his problem? Man #2: I can't imagine. It's a very small step.

4th: A woman in a motorized wheelchair sits between two possible entrances to a building. The door labeled "Suicide Prevention Program" is blocked by a set of stairs; the door with a wheelchair access ramp is labeled "Assisted Suicide."

5th: A large group of identical men in identical business suits is standing shoulder to shoulder, several deep. The man front and center says: "Remember, gentlemen, we believe in inclusion!"

6th (last) An able-bodied woman in professional dress is pointing to a sign which reads: Normality Training: How to stop upsetting people by looking disabled" A white woman with CP and a black man with dark glasses and a white tipped cane look on. The woman says: "Be normal -- But what makes you think we want to lower our standards?!"

Why? Any guesses?

I don't know why she did what she did, I don't particularly care and simply won't guess, but it didn't bother me because, really, who cares? Well, the answer the the question 'who cares?' was, 'a lot of people.

We entered the movie theatre through the back passage way and so came at the seats from the front. The disabled space in front of me was empty so Joe and I headed there. On the same row sat a woman, who I noticed because she was directly in my view when I was handing Joe my hat, my over my jacket scarf, my around my neck scarf, my mitts, my coat, my thick shirt I wear over my every day shirt. As the pile on the seat next to Joe got bigger with his stuff and my stuff, I noticed her.

She was sitting with her hands up beside her face and her fingers in her ears. Quietly sitting, watching the pre-show, with her fingers in her ears.

As I said I didn't pay any attention to the way she sat, different things make different people comfortable.

But for some reason the way she sat disturbed a number of people. I notice people in front of her turning, several times, to look back at her, stare at her with a kind of questioning disapproval. Three people in the row behind her mimicked her and were taken in a fit of giggles, I turned to them, not being a fan of noise in theatres, even during the pre-show, and saw what they were doing. My face turned to stone and my eyes to lava, they caught the look and stopped.

She sat like that throughout the movie. I know this because the couple up front turned and looked at her throughout the movie. Personally, I thought the movie more interesting and, other than when their movement distracted me, never thought about how she was sitting.

After the movie was over, we slipped out right at the start of the credit because we've over 60 and we needed to 'make water' ... it's a given.

Now, as I'm writing this, I have to say I don't understand why anyone would care how another person sits in a movie theatre. I don't know why it would draw so much attention. I don't know how it matters. I also can't imagine having a life so devoid of diversity that 'fingers in ears' sitting is cause for so much interest.

Help me out here ...

Confiding about Confining and A Shameful Plug

On the first day of Spring, which is hard to even imagine right now in the depths of winter's grip, Joe and I will be on an airplane headed to Heathrow. We've not done a lecture tour in the UK for a couple of years and we are really looking forward to going back. First, we love the work. Second, we enjoy the culture and the atmosphere of being in the UK. Third, and maybe most compellingly, we get to see people and places we've come to love. So, we're excited.

This life of being 'confined to a wheelchair' just isn't that confining is it?

I know I come back to this theme often here, but to me it's an important one. The fears I had for my future and for my life when my wheelchair first rolled into my hospital room were ill founded. Those same fears were exacerbated by the attitudes of professionals and, sorry to say, of friends, who kept wanting me to 'understand' that my life had changed and that I had to change with it.

But my life hadn't changed.

How I got around changed.

It's not the same thing.

Let me say that again.

IT'S NOT THE SAME THING.

I had to adapt, we had to reorganize and restructure, there were changes made - but not the one's I was told I would have to make. No wonder people experience depression and suicidal thoughts when, after seeing grave face after grave face after grave face they begin to long for the grave yard. There are truths to be told, hard truths about disability, but there are also myths to be demolished and destroyed. I got very little truth and myths were built up into a fearful size.

I didn't think I'd be travelling.

But I'm going to the UK!

Rah!

Wheelchair and all.

PS Anyone interested in booking a lecture date - contact me and I'll put you in touch with the lovelies who are organizing this for us.

Praising the Run

It's a simple concept.

In a store where one till is designated as accessible, that till should always be open. As simple as that is, it rarely happens. 9 times out of 10 in going into a store, the accessible aisle will be closed and several other ones open. I don't get it.

The math is simple.

If X represents all your customers and Y represents all your customers excepting people with disabilities then if you open a Y till you aren't serving X.

I have this discussion with managers of stores all the time. All. The. Time. And their eyes light up as they realize how simple it is. They make promises that they will institute a policy - because apparently common sense and common courtesy only matters if it's in the policy binder.

And then, even with policies in place, they still don't do it and I have the discussion again. "We'll have a staff meeting about the issue," I'm told and as someone who's napped through the occasional staff meeting I hold no hope.

But MY grocery store, where I shop all the time, I've been determined to establish it as common practise to always have an accessible till open. It took a lot of talking, a lot of waiting for the manager to be called, a lot of listening to excuses, but now it's most of the time, nearly all the time, that they get it right.

We went to the grocery store the other day I rolled in paying no attention to anything but steering around people and produce. Joe said, "Did you see what happened?" I said that I had not. He then proceeded to tell me that as soon as we came through the door the manager saw me from the corner of the produce department and he broke into a run to get to the front of the store and open an accessible till - which was not at the point of our entry, open.

I developed a plan. After getting our groceries I went and found him and told him that I was so appreciative of his efforts to make his store welcoming to people with disabilities. It was so nice to come in and be able to trust that I will be able to shop and then pay through the barrier free till. I told him he has done a great job.

I didn't mention that Joe had seen his mad dash to open a till.

Sometimes praise is needed even when someone is panting from the run to do what should have been done all along.

A Disabled Chat

First:

"Don't you love it when you are at the bank and the teller turns and yells to you, "DO YOU UNDERSTAND?" I always say, 'I'm not sitting on my brains and my ears, I'm sitting on my ass."

Then:

"People tell me that I'm their hero because I go to the gym and work out, I tell them that if I'm going to be your hero buy me a freaking cape."

Then:

"After my workout I get in the pool and go for a swim. I do laps. I love it when some young guy comes along, muscles all pumped. He gets in the pool and sees me swimming and thinks that he can outdo me, I'm just a woman after all. Then after two laps he's gasping for air and I'm still going. Then I get out of the pool and lift myself into my wheelchair. 'Yeah, buddy you got beat by a woman and not only that she's a cripple."

Then:

"I hate it when I'm out waiting for the bus and I see someone, usually with a fancy car, pull into the disabled parking spots to drop off their kids. I went over to one guy and said, 'This is disabled parking, you shouldn't be using this space,' you know what he said to me, 'Why do they have disabled parking at a gym, what would disabled people need a gym for?' I didn't say anything, I just pointed down at my wheelchair, like could you maybe notice?"

I love it, just love it, when I meet someone with a disability who enjoys a disability chin wag. It's fun to just talk and laugh about the experiences we share. It just feels so liberating. I have to say though, for the people around listening to the conversation - I didn't put my half in - were a little bit shocked. I think primarily after they realized that we, the others, were making them 'others' for a change. And they didn't like the outsider status one bit.

I couldn't feel sorry for them though, I was just enjoying being 'in' from the 'out' side.

What I Saw, Through Tears

When you are as old as I am, when you've worked in the field of service to people with intellectual disabilities for over 40 years, you are sometimes struck by things. Small things. Things that pass by younger staff without notice. This happened to me yesterday.

I was getting into my car to go home. A young woman was leaving the day program from the door next to the one that I'd just exited. She was clearly in a rush. Just as she passed me, the door she'd come from opened again. A young man called to her. She turned at the mention of her name.

"I didn't have a chance tell you that I love you before you left."

She rushed back up to him, gave him a quick kiss and said, "I love you too."

And off she went, on her own to catch the city bus.

I know this couple. I was at their engagement party. And then, at that party, and now, seeing them so openly and freely loving one another, I am awestruck at the life they are living.

Because there was a time.

Not long ago.

That their relationship would have caused concerns.

There would have been meetings.

Lots of meetings.

There would have been plans.

Lots of plans.

There would have been intervention.

Harsh intervention.

They would have been separated.

They would have been punished for seeing each other.

They would have been told that their love wasn't real.

They would have been told that their love was childish.

They would have been admonished for being silly.

They would have been advised to just forget each other.

They would have been told that it wasn't real, this love of theirs.

They would have been hurt by what we did and we wouldn't have cared.

We did bad things to people with disabilities who loved each other. We castrated men. We sterilized women. We wrote protocol and instituted procedures that followed policies that criminalized love. We made the human heart our enemy. We made love a behaviour. And we wrote plans to eliminate that behaviour.

Those of us who stood for the rights of people with intellectual disabilities to love were vilified, called perverts, and attacked as promoting sin and abuse.

They were hard times for those who promoted the right to love but they were desperate times for people with intellectual disabilities.

But now, he calls his love to her, she returns for a kiss.

They love openly.

They love without fear.

She must have wondered why I was sitting in the car crying as she went passed. She stopped to wave at me, concern on her face, I smiled through my tears and waved back. She grinned and turned and went on her way into the rest of her day.

News

Service, Support and Success - the newsletter for direct support professionals begins it's fourth year of publication with an article written by yours truly about what I've learned from being on the other side of service. To get a copy or to subscribe, email me at dhingsburger@vitacls.org . 

Today's post follows.

Chair Woes

The saga continues.

You may remember that I wrote about my wheelchair being 'under the weather.' I'll be going along and suddenly it will lose power, stop moving, and the lights on my joystick will flash angrily. Well, we called the repair place, they came and looked, and it's gonna cost between 5 and 6 hundred dollars for a fix. AND. And I'm going to have to wait until they get the part in.

OK.

Well, the odd thing was the moment that I made the call, the chair started working as it always had. We never had another problem with it. I gradually began to trust it again and went further and further distances, all with no problem at all. (You know where this is leading, right?)

Then Sunday, after church, we came out to get on the WheelTrans bus and as I was motoring along the sidewalk towards the bus. I came to an unexpected stop. I looked down and, again, the lights were yelling at me. I got it going again, went another inch, and faced more flashing lights. Finally I got to the ramp, apologizing to a driver who kept saying, 'It's alright, don't worry, we'll get you on the bus, we'll get you home."

I couldn't hear him.

Panic had filled my mind and there was no room, none at all, for supportive messages.

On the way up the ramp, the power failed. I had the driver behind me bracing the chair. I got it going again, and suddenly, I was on the bus.

Once in position, strapped down, and on our way, I could breathe again.

On the ride, and not until a few minute in, I realized how amazing the driver had been. He kept calm, even though I know the drivers have a real pressure to keep to schedule, and was supportive and encouraging through the whole thing. Even though my panic didn't enable me to hear or appreciate his words, the supportive tone kept the panic in place, didn't give it fuel to grow. I got exactly the kind of support I needed exactly when I needed it. Unlucky about the chair, extraordinarily lucky about the support. 

Magically, on the bus, the problem went away. Got off, drove in the building, down to the apartment and in and parked with  not a single problem.

We're calling to see if the part is in.

I can't take this.

How Ya Doing?

"The place looks great," I said as I took the tickets from the young man working the till. I was referring to the refurbishment of my local movie theatre. They've been working on it for quite a while and even though I've been there over the course of the renovations, I was taken quite aback at the 'big reveal'. It looks and feels like a completely different place.

The ticket guy joined me in looking round the lobby and said, "I agree, it looks great. But better than that, you must finally feel welcomed."

I noticed a couple come up behind me to buy tickets so I said "Thanks" and motored forwards.

I must admit here that I had no idea what he was talking about. I've always felt welcomed there. I thought maybe he was talking about how the lobby was much more spacious than it was before and there was a lot of room to move.

But.

I was wrong.

As we got our popcorn and headed to get our seats, we were surprised to find that they had installed door openers on each individual auditorium. I was now able to get in and out without someone holding the door for me.

Yeah, welcoming.

When we got inside we noticed that all the seats had been changed and on the seat beside where I park my chair was a bright, white, notification sewn into the back. It had the wheelchair sign and the words 'companion seating.' It was unmistakable. Clear as day.

Being men of a particular age we headed to the toilet after the show and, again, door openers. Where the door used to be held constantly open by a garbage can placed against it, a garbage can that had to be manoeuvred around, now there was a door opener and extra space.

We sailed out of the theatre and into the mall through double doors that both opened at the push of a button.

Wow.

Welcome.

If you didn't know that a building could say, 'Hey, nice to see you, welcome!'

It can.

Zombies In Our Midst

He came around the corner, over by the wall of cheese, saw me, and gave a nod of recognition. We don't know each other, but we see each other around town. We always acknowledge each other in that sort of conspiratorial way that those who are different do to say, 'Hey, good to see you, good not to be alone here.' We've never spoken, just nodded, yet I feel there is some kind of friendly connection.

This time was different though, after he nodded, he smiled. A sweet smile that stopped short of a grin. He put his finger up, indicating that I was to wait for a second. I wasn't going anywhere, I was breakfasting at the long tables between two delis.

A fellow, sitting further down the table, turned to me and asked, "You know him."

I said, "Only to see him."

He muttered something that sounded like, "That's all it takes."

I was rankled but before I could think through what he was saying, the fellow was back. With him, and I'd never in all the years I've seen him round town, seen him with anyone, was a woman, a very pretty woman, who was also a chair user. She looked over to where he was pointing and gave a shy wave. Then they went off together sharing the grocery basket that he was carrying.

My heart leapt in my chest. He looked so happy. She looked so happy. They looked so in love. I had come to think of him as a very solitary man. I never thought of him as a sad man, just a solitary one. His choice, and it is a choice because many of the disabled or different I meet prefer to not recognize kinship, to acknowledge me tells me how he feels about community.

In fact the first time I saw him, he startled me, he has a facial and a physical difference. I remember thinking after seeing him the first time how it must be so difficult for him in a world that is so worshipful of beauty; the type you can see, let's be honest the world doesn't give a shit about any kind of beauty that isn't skin deep. I think, and I'm ashamed of myself for this, he saw my startled reaction to his difference, but he chose to acknowledge me anyway, he chose to give me a chance to redeem myself. I took it and nodded back. That was the first time I saw his smile. That was the first time I saw the generosity of his soul.

Now, he is in love.

Someone else has seen that generosity, that warmth, and fell.

"She's awfully pretty," said the fellow from down the table, "even though she's in a wheelchair."

"You are talking to someone in a wheelchair," I said.

He ignored my comment and continued, "How could she fall for someone who looks like that?"

Several realizations happened all at once. First he was speaking to me, as an equal, because the other fellow, my nodding acquaintance, difference was one he perceived as so great, so horrific, that my difference paled in comparison. I've seen this before, when my disability was moved higher on the valuation stick in comparison to someone else and as a result I became socially more acceptable, socially more valued. Second, he expected me to join him in his revulsion at the relationship we had just seen - he expected that there would be universal agreement that some are simply not lovable. I have been in that category most of my fat life, to this very day I am assumed to be this big rolling blob of the living unloved. Then Joe enters the room and smashes that all to shit. Third, I am sitting next to someone who simply can't empathize with those he sees as different, can't see how beautiful new love is - because it always is. These take up a lot of space in words but in thoughts they took a less than a second.

I heard pans banging in my soul.

And it was my resolution.

I turned to him after his comment and said, "At what point did you become a zombie?"

The question was so odd and so out of context he turned to me and said, "What the fuck do you mean by that?"

The pans were really loud now but I stayed calm, and I spoke in the calmest most gentle voice that I could muster, "Well, it's clear that you have a heart that has ceased beating. You see two people in love and can't respond with warmth. That makes you a kind of living dead doesn't it?"

I'd finished talking but I didnt' take my eyes off him. I looked at him waiting for an answer. He blustered about muttering to himself about me being ridiculous, me being an asshole. I didn't stop looking, I mean how often do you see zombies out and about?

I kept my gaze on him until he'd picked his stuff up and moved to another table.

The pans stopped banging in my head, because of course, they'd worked.

They'd driven evil away.

Pandemonium: My New Year's Resolution

When I was growing up, at the point where I was allowed to stay up til midnight on New Year's Eve, I participated for the first time, without knowing it, in driving evil spirits out of my village.  I was confused as we went into the kitchen, a few minutes before midnight, as I watched the cupboard doors be thrown open and the pots and pans pulled out and distributed to eager hands. The the soup ladles and the turkey fork and other utensils were then passed around.

At the stroke of midnight we started banging our pots together or using the ladles to bang away on huge kettle pots. We began indoors and then we went out into the cold. We lived in the Rockies in British Columbia so winter was winter there. We must have made a sight standing in the dark of night beating and smashing pans. The noise was incredible. It added to those, in the rest of the village, who were also standing out in night coats and bathrobes banging their pots and their pans.

It was pandemonium.

I never asked why we did this, not for years. I assumed, as children do, that it was just a fun way to make the start of the new year. Then, once, in conversation with my Sunday School teacher, a woman I liked and admired then, and remember with fondness and admiration now, I learned the truth about the noise. The noise was to drive away demons and bad luck and things that go bump in the night. She told me, "The devil hates noise. The devil craves silence. Evil needs silence to succeed."

The year after learning that, I banged my pots with more determination than abandon. I like the idea of having the power to drive away evil.

I hadn't thought of this for a long while. Then, this morning Mike put this video up on his Facebook page of Ruby and Sadie outside with their dad banging and crashing on pots and pans:

Post by Michael Soucie.

I enjoyed watching the tradition continue. I saw the fun the kids were having. I remembered, with fondness those days of my youth.

Then, again, I thought about what my Sunday School teacher had said, sitting with me, talking about the tradition. Evil needs silence to succeed.

Evil needs silence to succeed.

Bullies, and abusers, and bigots, and prejudice expect and depend upon the silence of their victims and the tight lips of the witnesses.

A racist joke is told, not to be funny, but to see if any dare speak up and raise a word of protest.

A picture of a fat woman in Walmart with toilet paper hanging out the back of her pants is put on Facebook, not to be funny, but to see if any dare to break silence and come to her defense.

A kid with Down Syndrome is mimicked by another student, not to be funny, but to see if any dare. speak with action, and stand with her.

They test for our silence.

And if we fail that test.

Hatred wins.

This year I resolve that my silence will not be a bigots tool in the quest to hurt and oppress. This year I resolve to bang pots and pans to drive out evil - all year long.