Celebrate With Us In Boston This Wednesday: 25 years of the Americans With Disabilities Act

“My hope is that every place will be wheelchair-accessible” (Marianne Mahoney’s quote on the paper link she created for the Easter Seals paper chain project, Spring 2015.)

There’s nothing that Marianne likes more than family get togethers, and fortunately for her, we’ve got a large, and mostly local, extended family.  Last spring, we all planned to meet in a Boston-neighborhood restaurant that is completely wheelchair-accessible, with designated accessible street parking, curb cuts, and a ramp.  There are wide doors and a wheelchair-accessible bathroom.  There is clear access through the restaurant…. oh, wait.

Because on that day, there wasn’t.    Restaurant management had put a dinner table right in front of the handicap-accessible entrance, and our route to our family – seated in the next room – meant that we had to uproot an entire table of people.  As we stood there, an awkward pause ensued, during which I inwardly fumed that yet again, Marianne’s way was barred when it needn’t have been.   Graciously, the group of six noticed us, stood up, smiled, and made way for Marianne, and the hostess rolled her eyes at me and said, “I keep telling ‘them’ (management) that you can’t put a table here!”

So, okay, the people who were sitting there moved and were nice about it.  The hostess validated our issue.  But really, should Marianne/we have been made to feel grateful or to say, “sorry, excuse me”?   Should we have felt that we importuned an entire table?   Or felt the attention of all those seated nearby?  No.  It’s Marianne’s right to roll into a public restaurant and garner no more attention than me, or the guy behind me, or the kid behind him, and get to her reserved table with no more thought than someone who is able to walk without assistance.

Easter Seals Youth Leaders have coordinated groups throughout the state to create paper links like Marianne’s (with a statement of how the ADA has changed their lives or a wish for something that would make a difference still in the life of someone differently-abled).  These paper links will be joined together this week to commemorate the strides – and the work yet to be done – in the area of disability rights.

On Wednesday, July 22, from 11 am to 3 pm, you can be part of this civil rights movement by celebrating the 25th anniversary of the Americans With Disabilities Act (ADA) on Boston Common. Hosted by the New England ADA Center, the day will include a parade, speakers and family-friendly events.

“Accommodating a person with a disability is no longer a matter of charity but instead a basic issue of civil rights.” (from The History of the Americans with Disabilities Act, by Arlene Mayerson, 1992)

Yes to that.

To Marianne, and to all who recognize this as a civil rights challenge:  keep on keeping on. We can all play a part to further the rights of those whose civil liberties have yet to be fully realized.




Armchair Travels With Books I Have Loved

Winter Weather

Edgar Allen Poe Statue, Boston, MA January 27, 2015

It’s Tuesday night, January 27, 2015, and it’s still snowing in the Boston area.

There’s a traffic ban in many Massachusetts counties.  The South Shore and the Cape have been slammed – homes knocked off their foundation, frozen raging sea water flooding streets, massive power outages.  There are 700+ plows out in Boston, removing  23.3″ (and counting) of white matter. And there’s more coming at the end of the week, apparently.

Some will escape the harsh vicissitudes of our New England winter by plane, but some of us will journey in our imaginations only, aided by a good book.



Seamus at Newtonville Books, Newton Centre

I wish Marianne liked to read more.  I’m not sure why she doesn’t, although I know that it is hard for her to get a “just right” book at her reading level.  There’s also the issue of concentration and short-term memory white-outs.

Reading is, however, one of MY favorite (and least-expensive) escapes. It’s one that is taken from the comfort of my coziest chair (the blue one) with a cup of just-the-way-I-like-it tea and my trusty dog Seamus curled up as close to me as he can get.  By book, I can travel far for one hour, and I can go home without a backwards glance if I have a change of mind.

I also like lists.  So here’s one of the books I’ve read recently that I most highly recommend for the purposes of teleportation.  I only include books I’ve read within the last year (in parentheses, I list the setting so you can choose where you travel).  If you want to see my reviews, you can check out my Shelfari bookshelf (see Joanne M).


-Goodbye to Berlin by Christopher Isherwood (pre-WW2 Berlin)

-Burial Rites by Hannah Kent (Iceland)

-Out Stealing Horses by Per Petterson (Norway)

-Two Old Women by Velma Wallis (Alaska)

-The Country Girls Trilogy by Edna O’Brien (Dublin, Ireland)

-Gilead by Marilynne Robinson (Iowa)

-The Romantics by Pankaj Mishra (Benares, India)

-Wild by Cheryl Strayed (Pacific Crest Trail, CA)

-An Unnecessary Woman by Rabih Alameddine (Beirut, Lebanon)


-Following Atticus by Tom Ryan (the White Mountains of New Hampshire)


-The Book of Ages: The Life and Opinions of Jane Franklin by Jill Lepore (Boston, MA, in the Revolutionary-War era)

-Notes From A Small Island by Bill Bryson (England)

-The City of Djinns by William Dalrymple (Delhi, India)

IMG_2975I am the queen of the inter-library loan system (books, movies, audio- and e-books), but I also like to support my local bookstore. For me, that means a trip to Newtonville Books. Wheelchair-accessible; friendly, knowledgeable staff; stimulating author events; great paperback selection for adults, teens and middle schoolers. And they keep dog biscuits for my dog Seamus (open door policy for on-leash hounds). What’s not to love here?

Looking for more ideas to create your own reading lists?  Sites like The GuardianIndie Bound (for new books), and NPR’s Best Books of 2014 can provide good ideas.

Do you have some titles that evoke a particular place for you?  If you send them to me, I can create a shared reading list for those stationary travel times.  And if you live in New England, I hope you weather this storm in safety and comfort, with a good book in hand.


Love Is All You Need

IMG_0426RoseMary is slipping away from us now. Dementia has taken sharp little bites of her, piece by piece, over the past five years.  In the last few weeks, her dignity has been mauled by this monster.  Oh, but she was a proud, proud woman. I see echoes of that again, now that the morphine has softened the raw, red edges of panic and confusion. She looks like she is asleep, deeply.

I fear dementia, like I fear cancer or terrorists. It creeps on stealthy feet. Sometimes there is a reprieve, and we think we have conquered “it” with some magic bullet of drugs or surgical strikes.  But dementia bides its time and exacts its due. Lurking. Robbing. Defacing.

IMG_0427For some time now, RoseMary could barely put a full sentence together….but she could still say her prayers. The Rosary was her solace, and the words to the Hail Mary came effortlessly.  As of last week, she could say only  “we” and “the kids” and “Marianne” and she could smile. Yesterday, her mouth moved but only jumbles and sighs came out.

Yesterday was December 15th.   RoseMary and I sat close together at a table in a hot, crowded room full of old, old people, most slumped in wheelchairs, all with bibs on, some talking to someone who wasn’t there and others comatose. One of our table-mates mumbled “agua” over and over, while the other stared vacantly into space, his body arched in stiff strictures. RoseMary’s once-coiffed hair is now pure white and stick straight. Her hands moved and twisted aimlessly, reaching, shifting.  I stroked her head, and we listened to a tinny rendition of “I’m Dreaming of a White Christmas” on the radio, while the Christmas tree lights on the small, plastic tree blinked off and on. The aide sat at the next table and checked her smartphone. I held RoseMary’s hand and whispered in her ear what she has told me all my life: you are very special to me, and I love you very much.

IMG_0430And then I told her that I thought people were waiting for her to come to them now: her husband Leo, her brother Bob, her sister MaryAnna, her Mother and Dad. That she had received her last sacraments and that I knew, if there was a God in heaven, that she would be welcomed there. She, who had been unfocused and agitated, turned her piercing blue eyes on me and nodded, once, slowly. I swear there was a ghost of a smile playing at the corners of her mouth.

At home yesterday, I sat at my sunny kitchen table, paying bills and waiting for kids to return from school – and I received a call from RoseMary’s nurse.  At about 3 pm, RoseMary began to struggle with labored breathing.  Morphine and oxygen were administered.

RoseMary’s body is no battlefield, and there are no more monsters lurking under the bed. One by one, her family and friends have come to hold her hand and to whisper in her ear, “you are loved.”  She is whole again.  Love is all she has ever needed, and all she needs now.IMG_0423

Some Peace And Quiet In Cambridge

Hushed footsteps on marble floor, soft murmurs among the wooden pews, dim light reflecting a simple space.  Morning service at the Monastery of the Society of Saint John the Evangelist (a monastic community of the Episcopal Church) can set the tone for the day, and the chapel is beautifully accessible.  Street parking along Memorial Drive, at least at 7:30 am on a Saturday morning, was not a problem.  Here’s the worship schedule.  The chapel is open all day, and the monks lead five prayer services daily, including late-night Compline.

All are welcome.  It’s worth a visit, if you are so inclined.IMG_3252

One Tip For A Stress-Free Halloween This Year

For years, the prelude to Halloween filled me with a quietly rising desperation.  As my neighbors gleefully decorated – and then decorated some more – for The Big Night, my kids began the litany of “when will we decorate, mom?” and “when will we put our costumes together?” and then again, “can we get cool decorations like them, mom?”

To be clear, I love Halloween.  I just never quite felt up to the task of meeting three kids’ excitement levels, which rose exponentially from the time they got home from school at 3 pm until the moment we began our sojourn of begging at just-before-sunset.  The rigors of trick or treating in a wheelchair, on barely-lit streets and root-churned sidewalks, are left to your imagination, but I will say that it was tricky (pun intended).

Even now, when I have no excuse for slacking off in preparation for The Night Kids Love, here is what my front door looks like the day before Halloween:  DSC03610

My neighbors, on the other hand, have been hard at work for weeks:



DSC03615My husband will be home at 9 pm tonight, just in time to throw together something festive. Thankfully, my kids no longer need my costume help or a chaperone.  I am free to relax at home on Halloween, greeting the slightly tense but oh-so-brave witches and monsters who ring my doorbell.

Even better?  Halloween is on a Friday night this year, so I stocked up on some pumpkin-flavored beer at our local Craft Beer Cellar – because it’s about time the adults around here took back Halloween (and take note, Keene, NH Pumpkin Festive Ruiners, we will do so responsibly!).


Craft Beer Cellar, Centre Street, Newton MA


Our local Craft Beer Cellar is fully wheelchair-accessible, with great ADA parking right out the back door.  They’ll even put together a selection for you and deliver to your house!  Plus, the sales guys are really into their beer and actually seemed to want to know what we thought of their selections, once they’ve all been tried out.

And don’t worry kids, I might have lame Halloween decorations, but I buy good candy.


At The Front Of The Line

Here’s another take on the Justin-Bieber-using-a-wheelchair-at-Disney story, this from a New York Times writer who has used a wheelchair since the age of 4. The author posits that Bieber didn’t need a wheelchair to cut the lines at Disney – he gets VIP treatment as a “star” – but rather, was embracing his chance to use some “cool” wheels.

As much as life has changed for many of us – for the better  – with gains in assistive technology, improved wheelchairs and other tools, and breakthroughs in the medical field, I still think there are so many barriers to physical access that getting to the front of the line once in a while when you have mobility challenges is a consideration that counts for a lot.

I stick with my theory that Bieber should have stayed home and rested his knee, if he really hurt it badly enough to need a wheelchair.

And I don’t think he made wheelchairs cool. I think he made himself look like a user.


What FaceBook Needs

George Baletsa of Newbury died suddenly, unexpectedly, on June 24th.  He was 45 years old and has a wife and three children who now start each day without him.  My sister-in-law, his neighbor, is grieving, for she knows the value of a good soul.  She tells me that George was unfailingly kind to her and to her son, who played often at his house with his boys, and she misses him.

Every day someone dies and someone who loves them grieves forever.  There are freak accidents, cruel attacks, devastating medical diagnoses.  The older we get, the more it happens.

Facebook (FB) has been around for a while now, and its users have aged too.  An International Business Times’ study showed that FB users between the ages of 13-24 are leaving or canceling their accounts, while there is an increase in the 30-something and  40-something demographics.  The over-55 age group shows the biggest increase of all.   FB is indeed getting older.

I think the “new” FB users are sharing more nuanced, more personal information than earlier users.  Yes, FB will remain a place to see pictures of your cousins’ children and grandchildren, your friend’s vacation photos, a hilarious YouTube clip.  But increasingly it is becoming a place to document progression of cancer treatments, to mark anniversaries of loss, and to reflect upon the death of someone we love.   How hard it must be to access a social networking site after a loss like that of the Baletsa family.  And yet, FB could be a powerful source of connection and comfort, if there was a way to break out of its current superficial construct.

The “like” option is not enough, my sister-in-law and I decided.  It just feels weird to “like” a painful or soul-bearing statement.   I said, “What FB needs is….” and we declared simultaneously:  an “I hear you” option!

Someone who loved George Baletsa could post: “George died a month ago tomorrow; it is so hard to believe.”

And she could know that she was heard and that she is not alone, with a simple “I hear you” ping.   Words, often, cannot take away the pain, but the simple knowledge that someone bears witness can soothe.

FB:  are you listening?



Cabin Fever Abated

Yesterday was a balmy 46 degrees in the Boston area.  The sun felt good on my face, and I could hear birds chirping in welcome accompaniment to the beautiful sound of dripping, melting, snow.  Good riddance to you, snow mounds and black ice sheets.

My cabin fever feels like a thing of the past.  For much of February vacation week, the Boston area has been freezing cold and alternately snowing and raining icicles.  The streets and sidewalks have been treacherous, and driving can be tense, with so many streets reduced to one-way because of all the snow piled up.  The combination of freezing temperatures, bitter wind and icy snow can lead to enforced cave-dwelling.  I won’t even go into the bad behavior that intensifies around illegal use of handicapped-parking spaces when it’s winter.

Sometimes I can embrace the bad weather, and Marianne and I have marathon scrabble competitions, we try out lots of new recipes, and some napping happens.  We read books, do Facebook, listen to music.  This all gets really old quickly.

Being stuck at home when you haven’t chosen to hibernate can feel isolating, boring, crazy-making.  You are at the mercy of the elements (and sometimes of others to help you).    It’s hard to imagine what it can be like if you are someone for whom it’s easy to strap on your Yak Traks and walk out your door, weather be damned.

I know because I live in both worlds – I can snowshoe on out of here if I want —  but I also hang out a lot with a good friend who uses a wheelchair, so lots of times I don’t.   It’s not having the choice that makes the world of difference between a cozy week at home and a somewhat-smothered existence.


What empathy is and why it matters

Rarely, if ever, does an empathic response begin with ‘at least….’ says Dr. Brene Brown in this video.

Brown, a researcher and professor at the University of Houston, speaks here on the difference between empathy and sympathy, and why empathy connects us but sympathy creates distance.

We all search, at times, for the “right” thing to say when someone shares their vulnerability or pain with us. Sometimes there is nothing to say (reaching out to hold their hand or just nodding, “Ahhhh….” can be more than enough). But trying to find a silver lining (the “at least….” comment) never makes things better and can only create distance and anger on the part of the listener.

Dr. Brown says that in Texas, a common (sympathetic NOT empathetic) response to someone’s sadness or worry is “Bless your heart.” Her imagined antidote to that comment is a t-shirt emblazoned with this: “If you bless my heart, I’ll punch your face.” I can empathize with that sentiment, having heard many variants of “bless your heart” in my lifetime.