Being There

A couple months before my library opened last summer I began having muscle spasms in my lower back doing chores in the kitchen at the end of the day. I began to improve when my library opened. I felt better when I went to work. Going into work was my medicine.
As I have said many times, that’s the right answer.
It’s simpler and cheaper than getting a bigger apartment. I am very happily married. My T is my rock. He is working remotely.
Being on hand to help. People are coming to the library expecting somebody to be there. I have had several conversations this week already and it’s only Wednesday. I cannot do that part of my job remotely.
Doctor’s appointments.  We live out in suburban NJ. We use my health insurance.  Providers that take my insurance out where I live are few and far between, and mostly difficult to get to, given that we make the choice to live without a car.  Plus surprise bills are much more common.    These problems don’t happen when I go to the doctor in NYC Anything that is not critical, I come into NYC for.  This was really awkward when my library was closed. I have recently been having good experiences with NYU PT.  In most cases I go late in the afternoon, after working a partial day on site.
After saying all that, it seems important to acknowledge that it’s hard work. That’s why I take Fridays. By Thursday evening I am completely done in.

A new stage in my disability

I guess  the story begins with overall  muscle weakness.  As I have said before, the inactivity of the pandemic  was not good for my back.  I became hunched over.  There have been a series  of problems this year.  The first was back spasms that appeared at the end of the day.  They began to abate when I returned to my commute. Then about 6 weeks ago I started waking in the middle of the night with truly frightening back pain. This was not intermittent.  It was 7 days a week with no relief.  I would not call myself brilliant, but whatever gifts I had were dulled by really horrible sleep patterns.  (Plus I can’t do caffeine.) I remember one night I considered waking my spouse and asking for a trip to the ER.  When I went back to sleep I dreamed that he took me seriously and starting packing for the trip.  Eventually I devised a treatment with a NSAID ointment and heat that allowed me to go back to sleep
I did seek medical counsel. It took a while. First attempt to prescribe didn’t work.  The third doctor, however, said something that rocked my world and gave me some practical things I could do to get better.  She told me that  my gait, unsupported, was causing back stress that was coming out in the middle of the night.  As I picked up a cane, immediately things began to change.  I am taking a lumbar support brace very seriously.  I am doing the best I can to walk with either a cane or a rollator.  This is harder than it looks. Several times recently I have noticed my cane is on the other side of the kitchen.  This is a particular challenge because the pain relief is not immediate, its in the overnight.  I am working on letting it sink in, walking unsupported is hurting myself.
This caused me to reflect on the gift of having a problem that I can do something about. There are actions I can take each and every day to get better. So much of what goes on our lives we are powerless over. I am grateful to have something to do.
This also changes my perceptions of my disability. I am now out as someone who needs support in order to walk without pain. I simply have to accept it, and work with the process. I don’t know if PT will allow me to get less paranoid about NEEDING support. Time will tell.

Deep memories

This article really rocked me this morning:

To those who don’t know, I am a “recovering parent.” My child is 26 and we are very proud of them, they are well launched.  As I read this  I immediately I wanted to tell the author about our baby sling. No straps. Just throw it over my shoulder.   I read  “The Baby Book” by William Sears, I took attachment parenting very seriously.  We went everywhere  with it for about a year.  I believe that their first word was “down.”
I want to tell the author that they are not alone.  I want to tell them about my decision to have just one, because my body began to show signs of what we now call arthritis when my child was maybe 3 or 4.
My spouse and I worked together.  There were only a couple of outstanding moments when parenting called for something I could not do.

It is good to go to work

My journey to my Library is mind boggling.  Most of the first mile is on foot. 2 train systems. Then about a half mile to campus. Getting up from my office desk to go to the bathroom, and do public service. When the evening comes grab my rollator and stuff and rewind my ball of string. By comparison, working from home is the proverbial 30 second commute. During the pandemic and 18 months of working from home full time, I was careful to get up at the end of the day and go for a walk. I felt it was necessary. If I don’t walk, I will forget how. That basically worked. I have eased into the commute with no major problems.
However, life is more than leg muscles. Last winter I developed muscle spasms in my lower back. Particularly at the end of the day standing in the kitchen making supper was excruciating. I sought help. I won’t bore you withe the details of the journey. What is fascinating, in terms of living with CP is the final conclusion. The word is that 18 months of sitting got to me. Muscles in my lower back got weaker. This is why it doesn’t hurt to go to work. Going into my office is my therapy
This was the right answer, by the way. It would have been a truly terrifying problem if it hurt to return to work. I am not planning on retiring soon, but it did occur to me when I got the word, I am going to have to figure out how to go to the YMCA when I retire.

Is this a disability issue?

Greetings from the mid-summer. Given that travel is now possible, many of my friends and colleagues are traveling to the Caribbean or Europe, or wherever. This has reminded me that my spouse and I are not travelers. We went on a lovely one day outing to The New York Historical Society Museum. It was lovely, and we built some shared memories and shared some experiences. Then we stopped at one of our favorite local restaurants and went home and collapsed into our own bed. We love museums, so we may do it again before the summer ends. New York City is full of small and moderate sized museums. (The Metropolitan Museum of Art was judged to big and to difficult to get to.)
We both travel for business as needed. I actually consider the ALA Conference to be my vacation. Sometimes he comes with me. (My food is better when he is there to look after me.) We have talked about me jointing him at some point, but we haven’t done it yet.
However, the summer vacation, be it the tropics or a cruise or a road trip, just doesn’t occur to us. Travel is HARD. It is physically and mentally exhausting. I won’t go into details about my beloved. In our house normal is a setting on the washing machine.
So, is this a disability issue? Or are we just curmudgeons?

Anti-racist pedagogy

I want to really recommend this Ted talk on the consciousness gap in education:

When I saw it I was reminded of my deep commitment to anti-racism.  I believe that this is the great work of this season. Resources are  popping up at a great rate.  I think now is the time to stand together and change our world.  That’s why I will continue to highlight resources when I find them.  That’s why I will continue to write and speak on this topic when I can.

Our book is out!!

I am delighted and very grateful to announce that our book “Seeking to understand: a journey into disabilities studies and libraries” is now available for sale. I continue to be grateful for the remarkable journey that it’s been, exploring the issues of disabilities and intersectional identities. This is a book not only for the disabled, but for anyone who cares about developing empathy toward the functionally diverse.

A new book from Adam Grant.

Grant, Adam (2021). Think Again: The Power of Knowing What You don’t Know. Viking.
When I picked this up I thought it was going to be about fake news. It’s not about figuring out whether information is reliable. It’s about interpersonal relationships. It’s about letting go of certainty and collecting people who will challenge us. The value of conflict, as long as it’s task conflict. Stereotypes are arbitrary (138). How to get people to change (the right kind of listening). Things are much more complicated than can be conveyed with a binary choice. The radical value of active learning.
It’s a very thought provoking book. Things are much more complicated than they seem. Do I really know . . .?

Now public higher education is really important.

This article was recently highlighted by the New York Times, so it’s possible that some of you have seen it already.

It’s interesting reading. They consider how our economy is going to change as we emerge from the pandemic.  The premise is that we are not likely to go back to the way things were.


  • restaurants
  • travel
  • accommodations
  • Non-residential structures
  • Brick and Mortar retail
  • Travel


  • Grocery stores
  • Demand for IT and virtual services
  • Scientific and Medical Research

Please don’t take my word for it.  I’m sure I have missed something. This made it very clear that we need to really insist that public higher education be supported.

Now is an important moment

I have already said that I think we should all be contacting our representatives regarding HR 40, the bill for studying the creation of structure to provide reparations for the descendants of enslaved people.
     One of the amazing things that happen this last week is that I received the author copies of our book. Seeking to Understand: A Journey into Disability Studies and Libraries will be published on March 15.
I am preparing to present on March 18th. So I started to reread parts of it. What I want to focus on right now is the tremendous opportunity to get the Convention on the Rights of Persons with Disabilities ratified.

Guiding Principles of the Convention

There are eight guiding principles that underlie the Convention and each one of its specific articles:
  1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
  2. Non-discrimination
  3. Full and effective participation and inclusion in society
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  5. Equality of opportunity
  6. Accessibility
  7. Equality between men and women
  8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities
Please, this is an opportunity to join in something that has already be ratified by 182 countries. Now is the time. Please ask your Senator to sponsor putting this treaty forward for ratification.
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