Better dead than disabled

The fall-out from the “vaccines cause autism” fallacy makes me furious.  The link below shares the damage done.  At least, it shares the public health damage done; the social cultural damage is harder to quantify.

We have vaccines for a reason: lots of people die from these diseases.  Die. In this country we have had the luxury of forgetting that; because of dedicated work of scientists who developed vaccines, medical professionals who gave them,  and school systems that require them for enrollment, citizens of the US have forgotten that people used to die from these diseases.  And yet, because of one study that went viral, some parents lost their reason, decided to throw caution aside and stop vaccinating their children.

This whole catastrophe boils down to one sentence: “It’s better for my child to be dead than autistic.”

Let that sink in for a minute.

Here’s another one you may have heard.  In fact, you may have said it.

“If I ever become paralyzed/develop Alzheimer’s disease/need several limbs amputated/become disfigured in an accident / develop mental illness/ lose my sight or hearing(become disabled in a way that I don’t consider worthy of life) just put me out of my misery. It’s not worth living like that.”

It’s better to be dead than disabled.  You would rather be dead than live in a body or with a brain that doesn’t work in standard ways.

Bullshit. I can’t even be polite about this.  It makes me furious that as a society we decide that some people, based on who they are, do not even have the right to be alive.

Just once, I would like to hear someone say the same thing about behavior. “Boy, if I ever defraud people out of millions/ murder people/ beat my family/ shoot people with an assault rifle/ rape a dozen women (whatever behavior we know causes death and devastating trauma) just put me out of my misery. It’s not worth living like that.”

No one says it.  It’s time we should.



[Image: Black and white photo of a little girl with short hair and a full dress. She appears to have Down Syndrome.]

I’ve recently launched a Facebook page (also called “History Worth Mentioning”) and just set up a Gmail account to facilitate receiving stories about people with intellectual and developmental disabilities.

I’d welcome stories about any individuals (living or deceased) who were born in or before 1965, who were members of your family, your community, or neighborhood who were identified as having an intellectual or developmental disabilities.  Even the smallest, least detailed story can be important to the historical record (see the story about my great-aunt Mary, who was nearly forgotten by my family)

Contact me at



So, tell me about your sister Lainey…


WSA bulletin

I had the pleasure of hearing the life story of Elaine (Lainey) Howard directly from her sister Verna Murphy (shown in the attached link with Elaine at the Williams Syndrome Association National Convention in 2006); Verna is Elaine’s guardian and was her full-time caregiver until illness led to Lainey’s placement in a group home.  Elaine is currently the oldest known individual with Williams Syndrome, a rare genetic disorder that results in physical and intellectual disability; in August of 2013, she turned 90 years old.  In 2006, she was an honored guest at the Williams Syndrome Association  Convention, a living example that it was possible for individuals with WS to have a long and satisfying life.  Lainey had only recently been diagnosed with WS.  Her niece, Charlene, had been working with a little boy who had been diagnosed with Williams Syndrome, and she remarked that, “This sounds like Aunt Lainey.”  Verna remembers that she immediately looked up Williams Syndrome on-line, and spent hours reading the information she found; as Verna explained during one of our conversations, “It was a relief.  There was a reason why she was the way she was.”  The diagnosis was confirmed via genetic testing when Elaine was 83 years old.

Williams Syndrome is present from birth, but the family had no reason to suspect that there was anything amiss with their daughter.  Elaine was already 11 years old when Verna was born, but Verna recalls conversations and stories from older family members. Although their oldest brother Charlie noted that Lainey was always different from the other children because she learned so much more slowly, their mother believed that Lainey’s disability was due to a horrific accident she suffered at age 10.

Elaine and two of the other children were walking home from school when a passing truck overtook them on the road.  The other children were able to scramble up the embankment on the road, out of harm’s way, but Elaine was struck by a strapping pole on the back of the truck; her nose, cheekbone, and eye socket were broken and her eye ball was dislodged.  Lainey recovered from her injuries.

Elaine did attend school when she was young, learning some basic academic skills (including writing), but at the end of fourth grade, around the time of her injury, it was decided that she was no longer able to keep up with the other children in school and she spent her days at home.  Verna does wonder what would have happened if her sister had had more educational opportunities: “If they had programs then like they have now, Lainey’s life would have been completely different.  She was so sheltered and she wanted to be independent,” Verna said.

The Howard family lived in South Glens Falls, New York, when Elaine was born on August 6, 1923.  The family later moved to the town of Argyle, NY.  Eventually, there were seven Howard siblings- Charlie, Floyd (who died as a baby), Shirley, Elaine, Dwayne, Doris, and Verna.  Their father worked for a farmer, so Elaine spent much of her childhood living on a farm.  Like the rest of the family, Elaine had chores around the house.  She was able to do some simple food preparation (baking popovers or making pudding),  wash the dinner potatoes, keep the kitchen fire going,  bring up the cows, feed the chickens and wash the dishes.

Verna remembers Elaine’s questionable skill in dish washing. “My brother never ate a meal without checking his plate first,” she laughed.  Nevertheless, Verna earned herself a spanking from her oldest brother one day when she sent the same dishes through Lainey’s pile to be re-washed, wondering how many times it would take her to notice!

Lainey also cared for her nieces and nephews as they came along, often, according to Verna “rocking them all day long!” She relaxed by listening to soap operas on the radio, picking out songs by ear on the piano, whistling, and singing (quite common among individuals with Williams Syndrome).

I asked Verna if her parents or older siblings had ever talked about the difficulty of having a disabled child when so few services and supports existed, and Verna replied, “You didn’t think about it; you just existed.” She remembered that her mother was the sort of person that accepted life as it came and made the best of everything.

Even a potentially shattering crisis was handled within the family with all of the grace and dignity they could muster.  Elaine was exceptionally affectionate.  Verna remembered that this developed into “boy crazy” as she got older, and  she used to like to spend time with the men who worked the farm. The family often feared for her safety. And then their fears were realized.  When Lainey was 18 years old, an older man boarding at the family home raped her.  She became pregnant from the assault.

She was sent to a boarding home for unwed mothers for the end of her pregnancy and the birth of her child, a healthy baby girl she named Martha Elaine.  Nicknamed Marty or “Midge” (because she was so small), the little girl was raised by Elaine and Verna’s parents as their younger sister.

“Everyone around, even the school kids, knew the truth about Midge, but we were not allowed to talk about it,” Verna recalled.  Their mother told Lainey that if she ever told the truth about Midge’s birth, she would be sent away forever.  There was tension between Midge and Elaine growing up, not because of of how Midge had been born, but the ordinary tension of a younger sibling resenting a disabled sibling because she got extra attention.  It was not until about seven years ago that Midge sat down with Elaine and had a poignant conversations about her birth.

“Do you ever think of me as your daughter?” Midge asked.

“Every day,” Elaine replied.  The secret was now in the open, a relief for everyone in the family.

Lainey lived with her mother, eventually relocating to Florida, until her mother’s death in February of 1981.  Mrs. Howard, perhaps out of an abundance of caution, had asked three of Elaine’s siblings to become her guardian after she died. Fortunately,  Lainey’s life-long friend, Pearl Taylor, helped facilitate an agreement about where Lainey would live.  She lived with Midge and her family for about a year and a half, but the situation was stressful.  Verna then stepped up, offering to take Elaine for a few months to ease the pressure. Verna has been Lainey’s caretaker and guardian since November 1, 1982

Although Verna was still working at the time, Lainey was able to stay alone at home.  Then, Verna found an adult day program for her sister.  Elaine loved the program and stayed in it for 26 years.  Lainey still attends a day program a few days a week for socialization (“She’s always been a couch potato,” Verna recalls), but she is becoming increasingly frail.  Lainey has been free of the heart problems that individuals with WS often suffer from, although she has had many digestive problems over the years, some that have brought her close to death. So, it seemed fitting to mark her 90th birthday with a big celebration with family and friends, and a pile of cards from admirers (including me, which is how I met the family).  Lainey started “advertising” her birthday months in advance and inviting people to join the celebration.

This is not a story of sunshine and roses – the family has experienced ill health, stress, divorce, and tragedy- but a story of an ordinary family doing the best they could for a vulnerable family member.  Elaine is part of the fabric of that family.  She has brought a tremendous amount of hope to parents of kids with WS, proving that it is possible to live a long, satisfying, and connected life.  Thank you, Lainey.








Explanations, please! (or The Tale of My Tail)

Dee from the front, tail over shoulder on the right side of the image

From the front. Dee from the back showing tail down below shoulder blades.

Dee showing “tail length”


I wear a braided “tail” on the left side of my head.

Yes, it’s my own hair.

I’ve been growing it about 10 years.

To keep it looking decent, I have to re-braid it daily.

(Just getting the FAQs out of the way.  I should just add them to my business cards)

The next question is always a variation on “Okay, but WHY do you wear your hair like that?” Some people ask it immediately upon meeting me.  Some people – no joke- wait years before they risk asking me.

The truth is so boring, it borders on embarrassing.   The mythos this little strand of hair has inspired is much more interesting.  I feel as though I’m carrying my own social experiment with me every day.  The tail has a life of her own – I’m just her ride.

Here are the best stories I’ve heard and the painfully prosaic truth.

  • “Are you a Native American? Does it have a tribal meaning?” [I’m a Northern European mongrel.  My husband isn’t sure I’m indigenous to the planet, never mind the Americas]
  • “Are you a Jedi Knight in training?” [Coolest theory proposed! I nearly went with it until someone pointed out that the braid ran down the wrong side of my head.  A dyslexic Padawan? Maybe not]
  • “Are you a lesbian?” [Several friends at work did pronounce that my hairstyle was the “Most Dyke” of any in the office.  I was honored.  I’m also straight]
  • “Are you a Wiccan?” [ I’m Catholic.  The Church hierarchy is pretty confused.  They are nothing if not practical, though- if you can sing, they will turn a blind eye to your blatant liberalism and your chosen hairstyle.]
  • “It represents the fact that you are a free spirit and don’t care what others think of you.” [My boss and my therapist would have a field day…]

You’ll need to scroll down for the truth, but I’ve made my point.

Humans crave explanation for odd phenomena.  Have you noticed how we act after a huge disaster – why did it happen? Why did he (sorry, guys- statistics bear this out) carry out such a seemingly random and brutal act of violence.  It gives us a sense of control and quells the instinctive fear of what is different.

But, as I’ve reflected in past posts, the explanations we crave aren’t always quickly available.  They don’t always make sense.  Essential details are often missing.  So, we make up stories.  We try to plug the known variables into the equation and pray the math comes out right.  When it doesn’t, like the weak logic students we are, we change the numbers until we get a nice, tidy answer with no remainder.

The truth is much more complicated, but a lot more interesting.  Even the fiction isn’t as good.

[Oh right…

We went to a concert about 10 years ago, and saw a woman wearing a braided tail.  My husband thought it was cool, so I grew my own.  It’s kind of funky and I like it.  I hope the aides in the nursing home are making up stories about it in 50 years. 🙂 ]




Seeking your stories


Lainey, courtesy of the Williams Syndrome Association Facebook page

I read a post on Facebook about this remarkable woman with Williams Syndrome (not diagnosed until she was 83 years old) who is about to celebrate her 90th birthday.  On the long list of comments were wishes from parents of WS individuals, delighted to hear that their loved ones might have such a long and fruitful life and reminiscences about Lainey’s life with her family and the community.  I sent a birthday card and enclosed a request to interview Lainey and her family.

For readers of a certain age who are kind enough to have read this far, I would also like to hear your stories.  Almost everyone has a memory of a family member or family friend who had an intellectual or developmental disability.  You may have heard this person described as “slow” “simple” “handicapped” “retarded” or “backward”.  You may never have had a term applied to it before, but you knew the person was different or odd, and, in hindsight, you realize that they had a disability.  You may remember the person fondly, or you may have been profoundly uncomfortable or even afraid in his/her presence.  But, no doubt, you have information and insights to share.

These stories are important, and they are being lost every day.  I believe the stories are too important to lose.  If individuals with intellectual and developmental disabilities are to take their place as full citizens, they are entitled to a full history as well – a history of their place in families and communities, not just their place in medical textbooks or locked wards of state institutions.

Stories from the early 1900’s are great, but I would welcome stories of individuals born up until 1965.  My reasoning for that cut-off is that public education for all children with disabilities was not guaranteed until 1975  (children born in 1965 would have been in their late childhood by then); stories of education before and after legal guarantees would be very instructive.  Stories of individuals who are living or deceased are both helpful.

If you have a story you would like to share about a relative, family friend, neighbor, or community member with an intellectual or developmental disability, please fill out the contact form.  Your memories do not have to be exact, long, or lyrical to be important.  I can email you a questionnaire, which you can either email or post back to me.  Questionnaires can be filled out by more than one individual (might be a good multi-age activity at a reunion!).

I recently added a quote to the first page of my blog, written by the historian William Loren Katz (Katz did the first research on African Americans in the American West, another group largely ignored by American historians.  It reads,

If you believe people have no history worth mentioning, it’s easy to believe they have no humanity worth defending.” 

It’s time to defend their humanity.

Do you have a story to share? Contact me

Dangerous myths


When shocking and shattering events happen, it’s human to ask, “How could this have happened?”  What we’re really asking is “How can I keep this from happening to ME?”

Humans desperately need meaning – reasons, explanations, assurances- to cope with such things.  They need myths to believe in.

The problem is – myths affect public policy.  Sometimes this influence is benign; other times, the influence is dangerous.

Here’s an example: Remember the shootings at Columbine High School? What do you know about the victims and the perpetrators?

  • The perpetrators, Eric Harris and Dylan Klebold, were social outcasts.  They targeted students who belonged to popular “in-groups” – the jocks, fundamentalist Christians- in their rampage.
  • The boys hung out with other outcasts called “The Trenchcoat Mafia”?
  • One girl was killed for her belief in God. A boy was killed because he was black.
  • The root of these rampages (and more recently, the tragic rash of teen suicides) is bullying.  If we can stop bullying and punish those responsible for it, these tragedies won’t happen again.

How much of what you know is absolutely wrong? (Hint: after more than 10 years of work and analysis, researchers have determined that every statement above is false) In it’s rush to deal with “the problem” of youth aggression, policy makers decided that bullying was the cause and started creating policies and laws that have had a devastating effect on the problems they were created to solve.

Students are being disciplined, even legally prosecuted, for acts of bullying.  All children who are witnesses to bullying are now “bystanders” and need to be trained in how to be “up standers”.

School administrators became judge and jury.  Teachers became guards. Students were labeled “bullies”, separated and watched carefully.  Victims were too weak and ineffective to be allowed the chance to gain confidence and skills to help them cope.  All other students were bystanders, and watched equally carefully to see if they would “act up” or become obedient little robots. And the message was, children are too evil and/or weak to be trusted to behave well- adults need to monitor them constantly, in all environments.

The power to discipline children appropriately and, most important, the power to TEACH children better ways to behave and manage their emotions was taken away from parents and teachers.

I don’t condone children being allowed to get away with social or physical cruelty without consequences and direct instruction about how to act better in the future. My heart bleeds for those injured or killed in mass shootings. But, the problem of childhood aggression is complex, and the answers to it will also be complex.

(For a deeper and better explanation of childhood aggression, see the following links : www. and www.

I see so many parallels between the myths of the Columbine shooting and the myths about individuals with intellectual and developmental disabilities- the myths that became policy and degraded and destroyed so many lives.

  •  People with IDD must be kept away from “normal” people. 
  • Families were ruined by the presence of those with IDD
  • Most people with IDD were abandoned, hidden, and institutionalized.  Families that kept disabled members at home were rich, privileged, or downright heroic.
  • People with IDD can only work and live under direct supervision of those “specially trained” to deal with them.
  • To live with an intellectual or developmental disability was to live a half life.  It was a fate worse than death.

When we rely on myths alone to guide our policy, we get it wrong.  People end up as players in someone else’s drama.  Myths can contain kernels of truth, but never the whole or the only truth.  We need to look deeper if we want our policies to be humane.

We need to look deeper within ourselves if we are to become more human and help others achieve their full humanity.


Tell me a story

Stories change the world far more than facts do. We live out the myths that we were taught as children or myths we sought out for ourselves as we grew older.  It’s really by choosing our stories that we choose our lives.

I’m interested in the history of people with intellectual disabilities in the United States.  There are facts that exist about them – census numbers, the records of doctors, the archives of schools and large scale institutions – but those facts are sterile and clinical. The stories were bleak – no services, no access to schooling, family isolation, community indifference, inevitable institutionalization.  But even casual questioning has brought out stories that are much more complex and nuanced.  I believe that these are stories that need to be gathered, before they are gone forever.

A common complaint about history is that it is dull, an endless recitation of names, dates, and places.  But history is not just a timeline – great historical events, such as wars, triumphs, and even disasters, are stories.  Such great stories, in fact, we tell them over and over again to succeeding generations. We need those stories to guide our present actions.

As I started thinking about doing historical research through stories, I read a wonderful book called The Storytelling Animal: How Stories Make Us Human by Jonathan Gottschall.  He explores the intimate and innate connections between human beings and our love (and need) for stories.  It’s humbling book, particularly for someone like me who trusts memory and reason so deeply, but I couldn’t deny its truth.

I carefully read his chapter on life stories, knowing that these would be the type of stories I was seeking. “Some critics argue that most memoirs, not just the brazenly fraudulent ones should be shelved in the fiction section of bookstores.  Memoirists don’t tell true stories; they tell “truthy” ones.  Like a film that dramatizes historical events, all memoirs should come with a standard disclaimer: “This book is based on a true story.”(p. 161)

Having struggled for many years with depression, I found his description of the importance of story in psychotherapy to be one of the best explanations for its effectiveness in my life: “Psychotherapy helps unhappy people to set their lives straight; it literally gives them a story they can live with….A psychotherapist can therefore be seen as a kind of script doctor who helps patients revise their life stories so they can play the role of protagonists again- suffering and flawed protagonists, to be sure, but protagonists who are moving toward the light.” (page 175).

Just as individuals can move out of darkness into the light, I think humanity can do so, as well.  Have we made dreadful mistakes in the past? Undoubtedly.  We made them out of a lack of understanding, following the plot line of an awful story, thinking there was no other way, and that we were helpless pawns.  But was all of humanity awful? Didn’t we get it right sometimes? I believe that we need to look at the facts of history and at the stories of history, filtered through the senses and memories of those people who were there.

People with intellectual and developmental disabilities were often excluded from the narratives of their own histories.  This work is an effort to find those voices – from the individuals themselves, if possible ( I will share the stories of my friend, Al Zappala, who was confined in the Rome State School in a future post) and from those who knew them and loved them, if not.  But I don’t want my reach to be limited to my own immediate environment – I’m caught in the web of my own stories- so I am reaching out via the web to find other stories and other truths.

I’ll finish with a quote from a teacher of Zen philosophy, who wrote an in-depth, meditative work on the influence of stories on our minds and hearts.

“The limits of my stories are the limits of my world.

Like the proverbial fish that cannot see the water they swim in, we do not notice the medium we dwell within. Unaware that our stories are stories, we experience them as the world.

But we can change the water. When our accounts of the world become different, the world becomes different.”  David R. Loy, The World is Made of Stories p. 5.

Come in.  The water’s fine.



From Rosemary’s niece and nephew

In exploring my own family history, I contacted my one surviving uncle, The Reverend Dr. Terry McKinley and my mother’s cousin Marilyn Stanton.  I told them about my interest in Rosemary and their memories of having a developmentally disabled family member in the 40’s and 50’s.  Both had simple, straightforward, and deeply affectionate memories of their aunt and her life within the extended family.  These stories – quoted directly from email and a letter- are quoted directly below.

I hope they will give you an idea of the stories I would like to collect- nothing literary or academic, just the simple truths (day to day life) and emotions (love, amusement, discomfort, sadness) associated with life with the person with a disability.  I need no documents or proof.  Remember and honor the power of the stories however they are filtered.

Here are the stories from Rosemary Davlin’s niece and nephew.

From Terry- … I do have some clear memories, though I confess that the memories are filtered through my great affection for Aunt Rosemary.

Our families visited frequently, as your mom likely told you.  We kids found Rosemary to be delightful… spontaneous, always joyful, without guile, and possessing an uncanny knack for timing, especially verbally.

Grandma was often shocked when Rosemary cussed – nothing too serious (hell, damn, or our favorite SHIT!) and Grandma would bellow, “Nellie, did you teach Rosemary those words?” Nellie Buckmaster was an aunt who lived with Grandma and Grandpa during our growing up years.

We kids envied Rosemary for being able to say those words out loud and live to say them another day!

Rosemary is also the reason I have a special place in my heart for mentally challenged/handicapped persons.  She always greeted us with glee and wanted a kiss when we arrived and when we left.  I learned to relax and enjoy sloppy kisses given with great affection!

My recollections about the relationship between Grandma and Rosemary are these:  Mom and Dad related to us that Grandma felt “responsible” for Rosemary’s mental retardation and physical limitations.  Mom said it was her understanding that shortly after Rosemary’s birth Grandma was told that she should put Rosemary in an “institution”, but that suggestion was quickly refused.  Mom said that Grandma felt like it was her duty to care for her daughter, so the family adjusted to that reality.  It appears they adjusted quite well.

When Rosemary’s medical/physical needs became severe, she was placed in a facility in Tewksbury (Massachusetts).  She died in her mid-fifties.

I have a vivid recollection of being at the funeral home during calling hours (a.k.a. the wake) standing beside Grandma at the side of the casket and overhearing her as she said “My mission is completed.  I’ve lived long enough to take care of Rosemary, so I guess I can die now.” That got my attention!

Blessings to you and your family, Dee.  If I remember any more, I’ll send word along.  I’ve enjoyed the trip down memory lane.

From Marilyn: My dad was born in 1917, younger than Eileen but older than Rosemary.  He spoke of Rosemary and Eileen and of their time growing up.  Eileen was very smart and had the loveliest handwriting.  He said that Eileen and he had lots of fun fooling wiht Rosemary and every once in a while she would say something that would shock them, either by her memory of events or by making a joke.  Of course, one of the most famous stories was of Eileen making fudge.  Rosemary walked over to the pan on the stove and poured in a full glass of water.  Darn if it wasn’t the best fudge she ever made.

I don’t think they ever thought of Rosemary as disabled, just different.  This was passed on to my brother and I.

I wish my brother Jim was still alive, because he would have more of a memory than I as he was four years older, the same as your mother.  He fooled around with her quite a bit we had lots of laughs with her.  My memories stem from the fact that Grandma Davlin watched us during the summer while our parents both worked.  Rosemary would sit in her rocking chair on the back porch and not miss a beat.  The boys would play whiffle ball in the back yard and I would play in grandma’s garden.  She had lovely tall hollyhocks and roses of every size and color.  In front of the house there was a huge tree.  Under this tree was an old fashioned glider where I could swing all day long.  I chose the seat that faced Rosemary and she would ramble off a story that made no sense whatsoever but made us smile.  She would laugh and sing to her own delight.  We were never ashamed of her.  Our friends may have been a little uncomfortable but the neighborhood was small and we all knew each other pretty well.

She took a nap each afternoon and Grandma would come out on the porch to rest with a glass of iced tea.

I can’t remember when she was moved to the nursing home.  I was still young. The nursing home was at the bottom of Beacon Hill, close to my Aunt Eileen, your grandmother McKinley.  My dad and grandmother went to visit every week.  I went a few times but ultimately the atmosphere made me uncomfortable.  She soon forgot our names.  For some reason, I can’t remember her funeral but remember being told of her death.  Pneumonia, I think.  However, pneumonia was blamed for many deaths back then.

Finding Mary

Message to my sister on Facebook:

August 10, 2011 … I found Grandma’s older sister Mary!! 

Say what you will, and I’ll probably agree with you: the Internet is full of crap and it’s turning literate people into drooling zombies.  But, damn, it is an amazing tool.  I wrote my book using the internet to research, to connect with programs, to make reservations for travel, to email copy to my editor, etc.  No way could I have done this work without the Internet.

My mother, the keeper of most of my family’s stories, would have loved the Internet.  She died in 1994, when this kind of connection by email and blogs was only just beginning.  Perhaps it’s a good thing – she was an Olympic level shopper who was kept in check by having to physically GO to stores or to wait for the catalogues to arrive by snail mail.

Mum was the one who told me that Grandma McKinley (born Eileen Davlin) and my great uncle John Davlin were not the only children in their family.  My great-grandparents, John and Mary Josephine (“Minnie”) Davlin had four children – Mary, Eileen, John, and Rosemary.  Eileen and John grew up, married, and had children of their own, but their sisters did not.  Knowing my interest in disability, she mentioned that both of the sisters were disabled.  And that is where the story began.

John and Minnie met while working in the large textile mills in Lowell, Massachusetts.  Minnie only had an eighth grade education, and began working at 14 to help support her family.  I remember my great-grandmother as a quiet presence in my grandparents’ home: she had a squeaky upholstered rocking chair that she spent many hours sitting in, often watching the mass for shut-ins on TV.  She was extremely hard of hearing, which my mother attributed to working in the mills as a young girl.

Her first child, Mary, was born in 1914.  She had just turned four when she died in the terrible flu epidemic of 1918.  My grandmother was a toddler at the time (she apparently had the flu, too) and had no personal memories of her older sister.

Rosemary lived into her mid-forties and was well known by my mother’s generation.  Her story is the one that inspired my project, but I’ll tell about her in my next.

A few years ago, recognizing that my mother’s generation was dwindling, I started to ask about the family history – the names and spouses of the great aunts and uncles, for example.  I started asking about Mary.  Only none of my surviving relatives remembered her.

My grandmother had a baby girl in 1953 who died shortly after birth due to prematurity.  Yet, she was well remembered in the family history – my grandmother nearly died after the delivery and was hospitalized for several weeks, leaving her young family in the care of relatives.  They even remembered that a tree had fallen on the porch during a violent storm during this tense time, scaring my usually calm young mother into hysterics.  This lost child was always referred to by her name – Kathleen- especially by my grandmother.  Two granddaughters (one of them my sister) were christened Kathleen in her memory. That was the family way – we remembered things like that.

In a family like mine, forgetting a story is practically a sin. The fact that we nearly lost a family member because there was NO ONE to tell her story makes my blood run cold.

My memory for stories was pretty good, so I was puzzled.  Having exhausted other resources,  I turned to the Internet, and with a lot of fumbling and even more luck, I found her birth certificate and a record of her interment in the family plot in Lowell.

So, Mary did exist.  But what about the other part of the story – did she have a developmental disability?  That was only confirmed for me recently, through a letter exchange with my mother’s cousin, Marilyn Stanton in Florida.  To quote her letter: “I honestly do not remember my dad ever mentioning anything about his sister Mary except that she died very young and was retarded.”

My great-grandparents had two severely disabled daughters in a time when such things were often shameful family secrets.  Is that why there were so few stories about Mary? Did people think maybe her death was preferable to living with a disability? Was her life secret because of her parents’ grief? Or was it just that my great-grandmother was so quiet and her surviving children not having any strong memories of their oldest sister?  We’ll never know now.  But I’m relieved that I found out about her for certain before her story was lost forever.

Had Mary lived, her life might have made a greater impact.  Her younger sister, Rosemary, had a place in the family history – once I thought to ask about it.


Family stories

My mother’s family was from Lowell, Massachusetts. In true Irish-Catholic form, my grandparents had six children (only five who lived to adulthood), and kept in close contact with their own large families of origin.  I loved my extended family – grandparents, aunts, uncles, cousins- and was lucky to spend a lot of time with them growing up.

Sundays at my grandparents’ house (they moved from the large family home in Lowell to a modest home in Pelham, NH when I was a toddler) consisted of a lot of talking and as a young girl, I loved listening in.  In addition to the usual discussions of politics and current events, there were family updates and family stories.

Among them:

Grandpa McKinley one Halloween night handing out candy to the Trick or Treaters asking a little boy dressed as a pirate, “Well, where are your buccaneers?”, to which the child replied, “Under my bucking hat!!!!”

My mother, Lee (wonderful woman, lousy driver) hitting Pulaski’s monument while learning to drive with my grandfather’s old boat of a car and doing some kind of damage to the brakes. My uncle Terry (who was the only one patient enough to drive with her) managed to get them both home using the parking brake.

The time a couple of McKinley teenagers set fire to the reservoir while sneaking a cigarette (actually, the tall grass around the reservoir, but we had all tasted Lowell water, and could believe it would catch fire if touched with a match. Blech).

Most of the stories were apocryphal or at least highly embellished, but it didn’t matter.  The stories told of who we were as a family – sparky, funny, intelligent,  liable to get into trouble, but able to get out of it without too much damage done.  McKinleys were scrappy – mess with one of us, and you messed with all of us.  Which is not to say we were not taught how to behave.  It was actually a bad sign if the family was too polite to an outsider (it meant we couldn’t stand them); if you were part of the teasing and poking, you were considered family.  Loyalty was an important value; you could say what you liked to each other in private, but in public, the family had your back. I was honored when my favorite uncle and godfather, Michael McKinley, told me that I had a “good sense of family”.  Most of that sense came from the stories.

Knowing all of this makes me amazed that we nearly lost the story of a family member all together.  I found her story just in time.