Webelong

on being alone at Christmas

January 13, 2009 in community, spirituality | Tags: community, inclusion, spirituality | by webelong | Leave a comment

I’m not alone this Christmas, and yet, I am. I will be spending the afternoon with my dear friend, Yvonne, and her husband Bob, for which I am very grateful. So, what is the aloneness? and the not being alone?

I am alone because because I am not with my remaining family – my sister Sherry and her children, with two brothers within driving distance. They live in Florida, and, for a complexity of reasons, I cannot be with them now. A blessing – who could stand to be traveling via any form of public transportation right now? And a sadness – these are the people I grew up with, who know me in ways no one else does or can.

As I ponder, as many of us are doing, the ghosts of Christmasses past – I think of times when I was truly alone. When my daughter Lisa was a little girl, and the edict of our custody agreement said that I had primary custody, but that all holidays, especially Christmas, were to be spent with her father. To never be able to have Christmas with my only child destroyed my Christmas dreams – and hers.

I would listen to Christmas Carols and look at photogtraphs and weep almost endlessly. Too poor to be able to go to my parents’ home, and unable to face my family without my child, I would try hard to think about Jesus and hope, but could not get past my feeling of deep sorrow. After a year or two, I never bought a Christmas tree again.

I am not the only parent who is without a child at Christmas, and my child always came home to me, unlike others. For this, I am eternally grateful. This loss helped me to go beyond Christmas, or beyond what our culture proclaims Christmas must be. It is hard to be without family at Christmas, and many are. Even if the faith is not theirs, a holiday which celebrates the ties we have to one another, especially the ties of family, is a difficult one to face.

And so today, when I am not with my family and when I feel somewhat melancholy, I think of all the people with whom I am connected, all of you. I think of what hope means, and belief in human beings, and celebration of every child – I remember from the early days of the Civil Rights Movement in Washington, DC, finding a small poster of a child, looking up at the camera, and the saying beneath: “God doesn’t make junk.” God doesn’t make junk, and sometimes God gently moves us to go beyond ourselves, as God did move me.

It is painful for the heart to grow, and many of us have broken hearts which we remember at this time. Broken is open, and that is a metaphor I can live with. Best wishes for the season, my broken hearted and whole hearted friends! All of us are making this journey together, immortal souls, learning and understanding the incredible implications of being, alone and together.

(first published on Facebook, December 25, 2008)

ok – what would you do?

December 2, 2008 in access, disabilities, disability | Tags: disability, travel | by webelong | Leave a comment

On my endless bus trip to Albany, which I hasve made many times, I had a new adventure. I am an old-looking person who walks with difficulty, although I no longer need to use a cane when there isn’t snow or ice on the ground. I cough a lot. I carry a C-PAP when I travel. I sometimes look confused.

South Station on the day before Thanksgiving was really crowded, and I needed to change from the Maine bus to the Albany bus. The lines were very long, but things were fairly festive. One of the bus station personell came through and asked a few of us older people and people traveling with children to come to the front of the line, saying they were adding busses, and they wanted to make sure we got on safely and easily. As I was standing where I had been placed, a young ewoman next to me struck up a conversation, saying she had been waiting since 2:00 to get on a bus, and I answered that it was a very crowded traveling day. Then she asked me why I was standing where I was, and I smiled and said pleasantly that I was standing where the station personell placed me, so I could get on the bus a little easier. She became belligerent and said she should be standing where I was because she had been there longer (how did she know how long I had been there?).

I pointed to the families and the other older passengers and said we were all just standing where we were asked to stand, and began to point out the obvious reasons why we had been placed there, when she began yelling that I was “disrespecting her,” and asked a station person to move me out of the way and to pu her in the front of the line. He looked at her in bemusement and said very calmly that I should just stay where I was and that she should stay calm. When he left she continue to talk loudly about how I was disrespecting her.

When we got on the bus, which was comfortable and not crowded, she continued to talk to others around me about how I was “disrespecting” her. They seemed not to pay attention to her, and looked embarrassed.

As a teacher, I felt like trying to explain to her why I was placed where i was, and to point out to her that she was on the bus before me, actually, because she pushed past me.

I was tired and somewhat upset. I said nothing. I tried to put it out of my mind.

I think that maybe I reminded her of someone she didn’t like, since she didn’t attack the families or the other older people who were standing with me.

Perhaps I didn’t understand her completely, either, and didn’t respond as I could have, but I truly didn’t understand where she was coming from until she began speaking loudly. I was at a loss.

What would you have done?

Obesity

November 29, 2008 in access, disabilities, disability, obesity | Tags: disability, obesity, public transportation | by webelong | Leave a comment

I am a “big girl.”

Like many of us with physical and emotional challenges, I don’t drive, and never have, except for a brief four years when my ex-husband insisted that I learn. It was a disaster. All of the stuff about driving is the subject for another blog, but the upshot is that I rely mainly on public transportation to get around.

In taking the bus from Bangor to Albany, I was, of course, confronted with a full bus. There is a reason why so many people travel on certain days before a holiday. We work up until that day.

Because I don’t walk very well, I wanted a seat close to the front of the bus. When I went to sit on an available aisle seat, the man sitting in the window seat said, “You might want a different seat. I’m a big guy and you’re pretty big, too.” He didn’t look that big, but I took the hint. I found a seat much further back next to a young man who seemed not to have a problem when I asked if he minded if I said with him. (Note to self- the first guy was white (or appeared so) the second guy was black (or seemed so). A cultural thing? or just a nicer person?

In Canada, I read that the Canadian Human Rights Commission is deliberating about whether obesity, per se is a disability, and therefore indicative of accommodation in public transportation.

Many of us know that when mobility is difficult, when depression is a factor, when certain conditions make exertion/energy/breathing difficult, when we are taking certain medications, obesity is often part of the constellation of condition-related consequences.

At the same time, if body size could be thought of as an aspect of diversity, and, in the best of all possible worlds, not be loaded with the many judgments that come with it — laziness, emotional deficits, lack of control, lack of discipline, lack, lack, lack… I guess that’s too much to ask for…

This sounding whiney, and I don’t mean it to.

Of course, I’d like to weigh less. I am very much aware of the trade-offs I live with, and many other people who have complicating factors with obesity are well aware of them as well.

It is great to be able to walk.

It is great to be able to function emotionally in the world.

It is great to be able to maintain enough evenness in my blood sugar to be able to think.

It is great to be able to get places using public transportation.

It is great to have friends who accept me as I am.

It is hard to endure media stories and advice and depictions of people who are large, who have mobility challenges, who have emotional challenges, who have intellectual challenges.

We belong.

Losing a colleague

November 16, 2008 in disability, Higher Ed | Tags: Patty Coleman | by webelong | Leave a comment

#mce_temp_url#

Patty Coleman died a week ago Saturday of “cardiac arrest.” As Sandra points out – everyone dies of cardiac arrest – ! When she first came to the University of Maine campus, she worked tirelessly to organize students and faculty around setting up a quality MSW Program. She was diagnosed with MS before she was 30, and determined to achieve all she could in whatever time was given her. She was a charismatic, complex and often difficult person. She left many achievements behind, and she also left me, for one, with many questions and few answers.

The questions have to do with personality, personality changes in the course of a difficult illness or life situation, and bearing witness to a life.

Because of a difficult and complex series of negative experiences between me and Patty, I left our friendship over 10 years ago. Yes, she had showed me photographs of the lesions on her brain, and yes, she had talked about her cognitive and physical deterioration. But the truth was that when she behaved and acted in a way that appeared to me to be the ultimate betrayal of our trust as friends, and even as human beings, I could not understand and I could not forgive.

I have made peace with that rupture in my universe that occurred so many years ago. I was able to attend her funeral and bear witness to her life and her achievements. I was able to see the love her family had for her, especially the young ones. Most importantly, through the medium of words and photographs, I was able to see a common 1950’s childhood.

I am left with great sadness and no regrets. When people behave badly, even when there are extenuating circumstances, this bad behavior harms others, sometimes sending their universes spinning out of control and leaving a legacy of pain and wonder.

My sadness is that through the combination of personality, illness and circumstance, such an isolation and distancing occurred – not with regard to everyone, of course, for there were others whom Patty did not impact in this way.

I lost my friend many years ago; I bear witness, though, to the fact that we were friends and that we loved one another. And that she lived and achieved much and suffered from a devastating disability that had many circles of impact.

I wish only peace and release for you, Patty. We had a common history, common values, common goals. We also possibly had common misunderstandings of friendship and love. But here, now, at the end of it all, I can say that I did love you, and will continue to think of you as I puzzle my way through the rest of my life.

And on to the new

November 13, 2008 in Uncategorized | Tags: mental health, mental illness | by webelong | 1 comment

I am happy to have heard from Val that everyone from Maine survived AUCD – and that it was a great conference. I am eager to hear the details. I feel badly about missing it, but I am able to breathe again at night and my lungs are clearing out. Back to teaching yesterday.

I’m watching CNN right now, on using Ecstasy to treat PTSD. Hmmm… will this be another situation like the use of marijuana for pain and glaucoma?

Which brings me to thoughts about psychiatric disabilities. So many of us have challenges that are extremely difficult for others to understand. Like physical disabilities, things change. One week a person may be incapacitated for any number of complex reasons, another the same person may be at the top of their game, competent, engaged, active.

When psychiatric drugs are added to the mix, there is that “greying out” effect – which may make those with psychiatric disorders easier to relate to and manage, but has a tremendous effect on quality of life.

That is not to say that intervention isn’t important at times.

But to be told that one must be on medication for the rest of one’s life, in order to manage a chronic and complex condition, and when that feels like a half-life, well…

Thoughts when not feeling well

November 8, 2008 in access, companion animals, disabilities, disability, Higher Ed, inclusion | Tags: disabilities, disability, Higher Ed, obstacles to work, personal | by webelong | Leave a comment

As an educator with a few differences that might be called “disabilities,” I think a lot about continuing my work from this side of the desk as well as from the student side of the desk. I could have gone on disability many years ago, and chose not to. I believed that I would be able to work within my institution and manage my job and life.

Sometimes it has worked, and sometimes it hasn’t. This week, it isn’t working.

I have missed three days teaching, due to a cold, exacerbated by diabetes and weak lungs. I am making the difficult decision about attending AUCD in Washington, DC, a highlight of my year. I am feeling guilty about possibly not going, because the wonderful Lu Zeph has paid my way, and the wonderful Valerie Smith would have to present on Universal Design without me.

But I couldn’t breathe last night, and I just don’t get better the way others do – again. And I am getting older and just don’t have the energy to travel with my C-PAP, my prosthetic knees, and my documentation. To be at the airport by 4:00 AM, by cab, since I don’t drive, which means I will not sleep. To have everything in place for my companion animals and their caregivers. Sometimes these things can be obstacles, no matter how hard I try.

I worry about letting down my students; I am grateful for online teaching because I can do it as I have energy, and am awake.

I know I have a lot to offer, and certainly will continue going forward. This is not about self-pity or about looking for sympathy. It is about a reality that I, as a dedicated and persistent educator face, that sometimes confronts me more intensely than others.

Regime change

November 5, 2008 in access, Higher Ed, inclusion | Tags: access, G I Bill, Higher Ed, inclusion | by webelong | Leave a comment

ok, so now that we’ve voted, what’s next for education and access to education? What is new or next for access to Higher Ed, when the financial picture seems to be limiting access and choice? Does universal access imply a change in the way we finance Higher Ed? This has always been a major barrier to inclusion. I have to wonder how the new GI Bill, in concert with the ADA, might be a way of changing the dialogue and practice of inclusion here in the US.

Welcome to Webelong

November 4, 2008 in Uncategorized | Tags: Universal Design | by webelong | Leave a comment

and we do. Belong, that is. We are tewo educators and ordinary people living and working in Maine. We’re interested in Universal Design and the implications of Universal Design for Higher Ed, especially.

We’re also interested in your ideas of Universal Design and its implications for Human Ecology.

Stay tuned!

Webelong

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