Saturday 7 March 2015

International Women's Day 2015 - I Celebrate Caregivers!

March 8th is International Women's Day, so I can't think of a better time to celebrate the contributions of women who give care to their families and friends.  More women than men are caregivers: an estimated 66% of caregivers are female. One-third (34%) take care of two or more people, and the average age of a female caregiver is 48.0.  That's according to the U.S. National Alliance for Caregiving (2012).  

In Canada 54% of caregivers are women, but women spend more hours delivering personal care than their male counterparts.  In the population of caregivers giving more than 20 hours of care per week, women far outnumber men.  

Everyone is transformed by their caregiving experience, but some women have made it their life's work to ease the path for others.  They've done it by organising, first at a community level and then nationally.  They continue to advocate for caregivers well after their own caregiving responsibilities have ended.  

In no particular order, I've included here women caregivers whose work I respect and celebrate today.  
Women Caregiver Leaders

Dame Philippa Russell (UK)

Philippa Russell was appointed as Chair of the Prime Minister's Standing Commission on Carers, launched by Gordon Brown on September 3rd 2007. She was Disability Policy Advisor to the National Children's Bureau and was formerly a Commissioner with the Disability Rights Commission and Director of the Council for Disabled Children.
She is a member of the National Learning Disability Task Force, an Honorary Fellow of the Royal College of Paediatrics and Child Health and a Fellow of the Royal Society of Arts. She has Honorary Doctorates from the University of York and King Alfred's College of Higher Education, Winchester for her work with disabled children and their families and is an Honorary Fellow of the University of Central Lancashire. She was awarded an OBE for her work with children with special educational needs and their families, and the CBE for services to disabled people. In the 2009 Queens Birthday Honours List, Philippa was made a Dame.  Philippa's first priorities have always been the wellbeing of her son who has cognitive disabilities and her husband who had multiple health challenges.


Founder and Chairperson ADAPT (formerly The Spastics Society of India).  Mithu is the mother of Malini, her adult daughter who has cerebral palsy.  For over 36 years, Dr. Mithu Alur has been closely involved in education, healthcare and employment for women and children leading to social change, legislation and social policy.  Professionally, a Doctor of Philosophy and policy analyst from the Institute of Education, University of London, her thesis analysis concerned Indian Government policy for children with disabilities.

Sue Swenson

Sue Swenson is deputy assistant secretary for the US Department of Education Office on Special Education and Rehabilitative Services.  Sue previously served as CEO of The Arc US, as executive director of the Kennedy Foundation and as US commissioner for developmental disabilities in the Clinton administration.  Sue was educated in interdisciplinary humanities at the University of Chicago and holds an MBA from the University of Minnesota.  She is the mother of three adult sons, including one who very sadly passed away last year as a result of complex disabilities.

Eva Kittay

Eva Kittay is a Distinguished Professor of Philosophy at SUNY Stony Brook.  She is also the mother of Shesha, her adult daughter who has severe cognitive disabilities.  Eva's work has been a major influence on my thinking about caregiving.
Eva Kittay:  "We do not become a person without the engagement of other persons—their care, as well as their recognition of the uniqueness and connectedness of our human agency, and the distinctiveness of our particularly human relations to others and of the world we fashion (2001, p.568).
It is our ability to be in relationships with others rather than our ability to be self-sufficient that should anchor our understanding of what it means to be a person."
Kittay argues that this understanding of personhood in terms of relationships of mutual dependence brings with it a new understanding of justice:
"Justice that is caring begins with an acknowledgment of our dependency and seeks to organize society so that our well-being is not inversely related to our need for care or to care; such justice makes caring itself a mode of action" (2001, p.576).
Adrienne Gruberg

Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.

Denise Brown  Denise M. Brown operates Tad Publishing Co., based in Park Ridge, Ill. Through her organization, Denise helps persons who care for a family member with a chronic illness or disability. Denise gives presentations and seminars about the caregiving experience; created and maintains the web site; and coaches family caregivers and professionals interested in working with family caregivers.
Denise is a certified caregiving coach, working with family members, professionals and organizations. As a coach, Denise helps individuals and organizations achieve goals, gain insights and plan for the future.
In addition, she is Executive Director and Founder, The Center for Family Caregivers. The Center is a non-profit organization dedicated to helping persons who care for chronically ill or disabled family members.

Women Caregiver Writers (Books and Blogs)

Louise Kinross (BLOOM - a blog about parenting kids with disabilities from Holland Bloorview Kids Rehabilitation Hospital)
Louise Kinross is Mom to four children, including a young man with a combination of cognitive and physical disabilities.  She combines her skill as a journalist with her personal life as a mother to shine a light on new resources, research and to reflect on the meaning of our shared experience as caregivers. 

Judy Fox and Andrea Hurley (When the Table Turns - a blog exploring the meaning of caring for our elderly parents)
Judy and Andrea co-write this very sensitive blog about Alzheimer's caregiving.  From their website: 
"This blog site is a response to a calling to do with my aging mother. It runs like a current through my veins. We live in a culture where our seniors are all too often not valued for who they are. They are left undiscovered in their final and precious years. One day we will all be in these same shoes—unless...
As the veil of survival gets thin in the life of my aging mother, treasures of the heart appear. Treasures I never knew existed. The purpose of this blog site is to find words to express those treasures."

Ellen Seidman (Love That Max - A Blog About Parenting Kids with Disabilities)
Love That Max is a blog about raising kids with special needs and special powers. I write about the highs and lows of parenting, and share relevant disability news, videos, and good stuff that catches my eye, like the trend of girls with special needs being crowned prom queens. I don’t shy away from controversial posts. My goal is to both inform and inspire conversation, and to get people who do not have kids with special needs to better understand them and see the ability in their disabilities.

Lisa Genova (Still Alice) Lisa Genova is the mother of two children and the former part-time caregiver of her grandmother who suffered from dementia.  Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University. She is the author of the New York Times bestselling novels Still AliceLeft Neglected, and Love Anthony.  

Women Caregiver Entrepreneurs

Vickie Cammack
Vickie is step-Mom to a young woman with Down Syndrome and gives care to her own mother as well.  She is the founder and creator of Tyze Personal Networks, an online tool to bridge family caregiver support with paid support.  Vickie is also the Founding Director of PLAN Institute, and co-founder of Planned Lifetime Advocacy Network (PLAN), a pioneer social enterprise supporting families to secure the future of their family member with a disability. She created PLAN’s Personal Network program, a unique response to the isolation and loneliness experienced by people with disabilities and mentored the spread of grass roots PLAN groups in 40 locations globally.  This year, Vicki was awarded the Order of Canada for her work in the area of family caregiving.  

Julie Keon
Julie is a mom first and foremost to her 11-year old daughter, Meredith, who deals with life-threatening cerebral palsy.  Professionally, she designs, creates and executes ceremonies that mark life's transitions and important events as a Certified Life-Cycle Celebrant and Licensed Marriage Officiant.  Julie's new book (What I Would Tell You) will be released to the world in April, 2015. 

Micky Ashley
Micky Ashley is Mom three children, two of whom have complex disabilities.  When Micky became housebound with her caregiving duties, she decided to start a sewing business, creating specialised clothing and other special needs items from fabric.  Her business, Something Sew Special, embodies the entrepreneurial spirit of women caregivers working from home. 

Cindy Laverty
After caring for her own family with significant care needs, Cindy founded 'The Care Company'.  Cindy Laverty is affectionately called “The Fairy Godmother of Caregiving” and she is dedicated to creating a nation of empowered family caregivers; people who are in service, knowledgeable, confident in their role, but who also understand that a life lost to caregiving is no life at all. She is a Caregiver Coach, author and public speaker.

Olive King
Olive King has five children, one of whom has cognitive disabilities, autism and frequent challenging behaviors.  The King family live in a small, rural community in the Bahamas where they operate a taxi company and where Olive's husband is a Baptist Pastor.  Olive has a home bakery business where she sells homemade baked goods as well as home grown garden produce.  She seeks out opportunities to support other women giving care in her community in order to generate a sense of mutual support. 

Heroic Women Caregivers on the Frontlines

Kathleen Jordan
Kathleen Jordan is my mentor and someone who has spent her entire life caring for others.  Kathleen cared for her mother until she died a 'good death' surrounded by the love of family, she has cared for her adult son who has multiple disabilities and more recently, nursed her husband until he passed away last year.  Kath taught me about community organising and about the value of inclusion and family centered care.

Julie Drury
Julie Drury is mother to two children, one of whom with a life-threatening rare disease.  Julie is in the thick of intensive caregiving now, but has already demonstrating through fund raising, blogging and activism that she will have a lasting impact on the care of children and adults with rare diseases. 

Rose is Mom to Jon, 45, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.  Rose not only cares 24/7 for her son Jon, but also supports legions of other caregivers via the online support forum, 'Braintalk Communities'.

On this International Women's Day 2015, I salute all the women who give love and care to their families and friends every day of the year.   The women caregivers I have listed here are only a tiny representation of our massive collective impact on healthy families and the wellbeing of our societies.  'We bloom where we are planted' and we create with what we have.  

Happy Women's Day, everyone!

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