Tuesday, 15 May 2018


Yesterday I had a massage. I needed it because for about a week now, I was grumpy from feeling rickety. A searing ache in my lower back meant that climbing stairs was a slow process and lifting my left leg to slide into the driver's seat hurt like the blazes.

It wasn't always like this.  For years, I lifted Nicholas.... right up until he was 18 and nearly six feet tall. "Hey Nick", I'd say, "You are my personal trainer!  No osteoporosis for me - I'm as strong as a WWE wrestler.  I kick butt!"  And we would both giggle at my ridiculous effort to imitate his wrestling superstars.

Regrets?  I have a few.  One of them is lifting Nicholas so long without bothering to use a lifting device.  We eventually had a ceiling track installed, but it was always so much quicker just to lift Nick myself instead of bothering with the sling.  Now, I am paying the price for thinking that I was immune from the wear and tear of repetitive strain. 

So, this week, on doctor's orders, I had a massage.  Karina, the massage therapist has the build of a long -distance swimmer and the manner of a zen healer. Karina's clinic is called Metta. I asked Karina about the meaning of the word and she explained that it is a Buddhist practice of meditation.  "Umm humm," I was relaxed, listening intently at this point.  "Anyone can practice Metta", she said.  "It involves the contemplation of loving kindness - the sort that you feel for your new baby. You begin by directing all that loving kindness to yourself, as if you are the baby.  You meditate to fill yourself up with loving kindness.  That way, you are ready to begin giving it to others."  "Ohhh", I thought. 

Here is how the Wikipedia explains the Metta practice:

The cultivation of loving-kindness (mettā bhāvanā) is a popular form of meditation in Buddhism. In the Theravadin Buddhist tradition, this practice begins with the meditator cultivating loving-kindness towards themselves,[7] then one's loved ones, friends, teachers, strangers, enemies, and finally towards all sentient beings. In the Tibetan Buddhist tradition, this practice is associated with tonglen (cf.), whereby one breathes out ("sends") happiness and breathes in ("receives") suffering.[8] Tibetan Buddhists also practice contemplation of the Brahmavihāras, also called the four immeasurables, which is sometimes called 'compassion meditation'[9]
So, last night, I didn't sleep well. That's usual for me - the effects of my age combine with the heightening of everyday worries in the early hours. So I thought of Metta.  I began to breath deeply and slowly.  I thought of myself as my own precious baby.  My thoughts kept straying to tasks, events, past transgressions.  But I will try again.  This Metta is a very good thing for caregivers.  Perhaps Buddha himself was a caregiver. 

Tuesday, 8 May 2018


I am delighted to host this guest post by Dr. Yona Lunsky. Dr. Lunsky is a Clinician-Scientist in Adult Neurodevelopmental Services and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at the Centre for Addiction and Mental Health. She's also a Professor in the Department of Psychiatry at the University of Toronto. Yona is all those things, but she is also a sibling of a beloved sister who has developmental disabilities and she is a daughter. This is Yona's Mother's Day reflection on her own family and on the role of disability Moms everywhere. 

Through my work over the past several years, I have had the honour of getting to know many mothers of youth and adults with developmental disabilities. I hope we can celebrate these mothers this mother’s day, for their creativity, passion, persistence, and wisdom as well as for the love that they give to their sons and daughters with disabilities. But in this blog, I would like to celebrate my own mom, and by doing so, celebrate mothers like her, who helped to create the fertile ground for moms of today to further push the envelope and lead to change. 
My mom would not describe herself as a leader or an expert. But as a mother of 4, including my older sister, who is turning 50 with a developmental disability, my mother has been both. When my sister’s disability was diagnosed before the age of 2, my mother was advised to place her into institutional care  but she did not listen to that advice. My sister remained at home. My mother found programs when she could, and when she couldn’t find them, she made them.
My mom was convinced that my sister could learn more from children without disabilities if only she could spend more time with them. And it didn’t make sense that she should spend a big part of her day traveling to a special school when she had a program right in our neighbourhood. It was a pretty strange idea at the time, but my mom convinced another mother, who was also the school kindergarten teacher,  that maybe my sister could spend some time in this classroom setting with children a bit younger than her,  for a few hours each day.
My sister’s first segregated class experience in elementary school was a difficult one. Her teacher did not understand her needs, and did not seem particularly open to change. At that time, many parents would have been grateful to have a program at all and would have left it at that. It was difficult to speak up before we had special education advisories and parent advocacy groups. But my mom advocated to find a different program for her, where the teacher was ready to listen to my mom and work as part of a team, before this was commonplace. In the new school, my mom volunteered in the classroom once a week, which the teacher allowed and appreciated, and which also helped my mom to learn what was happening in the classroom, so she could better help my sister at home.
My sister continued in segregated special education classes until graduation from high school when she was 21. But my mom was thinking about ways to prepare her for what happens after that time, and she pushed the boundaries again to create programs when there were none. What if there could be funding for an assistant to support my sister in a few regular classes? Could she spend time with her peers who did not have disabilities? Could my sister get some time outside of the classroom to learn work skills with the support of an aid? This was not standard at the time. In fact, it was just a pilot, to see if it could work. But people were willing to try and my sister had both some inclusive education at her public high school, and she was able to develop work skills in a co-op placement, just like students without disabilities.
My mom understood that my sister needed more than what she could be offered during the school day and so she helped to start several programs for my sister and other kids at our local jewish community centre.  Eventually there were several evening programs, weekend activities, and a summer camp, which ran along side the summer camp for kids without disabilities, and sometimes my sister joined me in the activities  I was doing. It meant that there was a single drop off and pick up so more activities for each of us. Even though I was never able to go to the same school as my sister, when it came to what we did for fun, we got to do these things together. 
One of my sister’s favourite activities was day camp. She loved the songs and the dances, the cheers, and the competitions. What if she could be a counselor in training? My mom approached a local summer camp which has begun to include younger children with disabilities in their regular program. My sister was too old to be an integrated camper, but would they be willing to integrate a staff? It fit with their mandate of including kids with disabilities as campers and could model to kids and families that people with disabilities were valuable staff members as well. Somehow, my mom’s creativity won out again. My sister worked at that camp for many  years and earned a plaque recognizing her as an honorary life staff member. Staff supported her to do her job at camp and they also included her in evening social activities outside of camp. Since that time, many other individuals have transitioned from a camper to staff role, thanks to my sister and my mom, her advocate.
When my sister was diagnosed, there were no online resources or Facebook groups. You were on your own. Initially, my mother found some informal parent to parent support through the programs she participated in. She met a few other mothers in similar situations at a nearby church which held a nursery program.  And on Saturdays, she started to get to know some mothers of daughters in the change room at adapted swimming lessons. Swimming was not just a drop off program because all the kids who went needed their parents in the change room to get them ready and the lesson itself wasn’t that long, so they waited around during the class. This little bit of time with other mothers was helpful (at this time it was mainly mothers and not fathers who were involved in these activities) but no one had much free time  How else could parents spend time together and learn from one another?
My mom started a special needs parent group for parents from all backgrounds, which met once a month at our local jewish community centre.  Parents wanted to learn information, so there were different speakers who came, in addition to the parents helping each other. No one had very much free time, but people knew this was important and many tried to come. My mother also helped other parents when it came to IEP meetings. It was a small thing, as my mom explained it, but she would volunteer to go to the IEP meeting of another parent, so they would feel less alone, and be able to speak up. 

My mom was a family advisor before they had family advisors. She did this work unpaid, and even though it ended up helping others, it started because she needed to help my sister. It was not respected work at that time, but it was the sort of work that mothers like her did because they knew their children best and they wanted to make things better. If it wasn’t for moms like mine, I am not sure when deinstitutionalization would have happened.  Inclusion at school and at work, it only occurs now because people like my mom spoke up and showed us how to make it happen.  So this mother’s day, lets thank these mothers. We can all learn from them, to inform what we push for today and tomorrow.  And an extra big shout-out to my mom who is pretty amazing.

Saturday, 5 May 2018


Recently I read a provocative and inspiring blog by Cormac Russell, the founder and CEO of Nurture Development, one of eleven strategic partners of the ABCD Institute. I blogged recently about the Asset Based Community Development Approach, or ABCD. I think the approach has a lot to offer caring families because of the work they do to empower marginalized groups in communities (yep, that's us).
Here's Cormac's blog - I've shifted the perspective a bit. Read on and you'll get the idea - all the words in caps are mine.

Five Questions on Citizen (CAREGIVER) Life and How to Support It

Imagine how different things would be if well intentioned helpers took care, to first discover:
  1. The informal ways communities OF CAREGIVERS sustain themselves.
  2. The informal ways that things get done in a community OF CAREGIVERS and the stories that reveal the quiet and invisible ways residents (CAREGIVERS) make a difference.
  3. How different cultures get along and have come to understand each other (EG. HEALTH CARE AND SOCIAL CARE PROFESSIONALS IN CONVERSATION WITH FAMILIES)
  4. How people (CAREGIVERS) naturally and competently produce care, health, safety, sustainable foods, raise their children, care for their environment, and nurture their local economy.

Then having discovered these four indigenous competencies, helpers (SERVICE PROVIDERS AND POLICYMAKERS) proceed to work with local people (CARING FAMILIES) to further precipitate those ‘discoverables’ by supporting that which was previously disconnected, to become productively connected.
Working this way is clearly more sustainable and respectful of hidden indigenous inventiveness. The downside is that it is slower, not controllable/messier, impossible to scale, and complex to measure. For those interested in promoting more citizen (CAREGIVER) led invention, that’s a combined price worth paying. They will therefore happily put the proscriptions in place to ensure institutions don’t overwhelm, demean or displace those capacities; instead deeply listening and appreciating them. (SUPPORT US, DON'T SUPPLANT US.)
In stark contrast, for those committed to efficiency, measurability and scalability these competencies are an irrelevance at best; an irritant at worst. For most others who occupy the provider camp, such capacities are fanciful myths: wishful thinking.
For the deliverers and providers of this world, the solution is there to be prescribed, why wait for it to be discovered, when they’ve already figured it out (WE KNOW WHAT WE NEED!)? But, for the discoverers and the searchers the possibilities are there to be revealed, connected and made productive over time at the speed of trust. It’s the difference between ego and eco.
The ego versus eco choice is made every day. It is important therefore, for democratic processes and cultural wellbeing that we as residents (CAREGIVERS) remind local practitioners of the value of valuing us, and that we remind those who think they know better than us, that that is the surest way to never get to know us better.
Those practitioners who understand the importance of placing discoverables ahead of deliverables have also come to understand the importance of re-functioning our communities, and placing the urgency of community (CARING FAMILIES) re-functioning ahead of institutional reform. 
Cormac Russell

Thank you, Cormac! 

Friday, 27 April 2018


In photography, mindfulness is like observing something for the first time, even though you may have looked at it a thousand times before. For example, when you’ve been away from home for a long period, and then, upon returning, you suddenly notice things to which you had become so accustomed that your eye failed to even register them any more—the decorations on the walls, the color of the rug, the view out the window. It’s like that moment when you look at a family member or close friend and suddenly realize that you are truly SEEING them, as if for the first time, and not just looking numbly at them, as you usually do. Mindfulness is a deep kind of knowing. - John Suler

In her introduction to Portraits in Life and Death , Susan Sontag observes "Life is a movie; death is a photograph. Photographs turn the present into past, make contingency into destiny. Whatever their degree of “realism,” all photographs embody a “romantic” relation to reality."
She goes on to say "The camera’s uncanny mechanical replication of persons and events performs a kind of magic, both creating and de-creating what is photographed. To take pictures is, simultaneously, to confer value and to render banal." 

"Seen through photographs, people become icons of themselves....Photography also converts the whole world into a cemetery. Photographers, connoisseurs of beauty, are also — wittingly or unwittingly — the recording-angels of death. The photograph-as-photograph shows death. More than that, it shows the sex-appeal of death."
Those words really struck me. I thought about the photos I have of my mother. About how my sister (who is an artist) and I talk about the shape of our Mom's back when she's sleeping. These moments of quiet observation that bring together the memory of our youth and present reminders of our mortality come together more often when we decide to take pictures. What we're really doing is seeking meaning in our everyday lives. 

My sister and I talked over the ethical concerns of photographing loved ones at home. Is this exploitation? Could image-making ever tip into a kind of voyeurism? One of my nieces observed, "If I was sick, I wouldn't want anyone taking my picture!" Obviously, people will have to judge their own art, their own photographs or drawings and their own motivations. They will have to decide who will receive these images with love and openness to a greater understanding of our deepest caring relationships. Maybe some images are not for sharing. Nevertheless, there is no doubt that art can help to heal broken hearts and it can make meaning from lives that seem to have no meaning. Photographs can document activities, too, and pictures can be conversation aids. "Mom, this robin came to our feeder yesterday. You said he looked like a man in uniform!" Sometimes too, images are infused with love and intimacy - they can help us recall why we care every day. 

But should you make art if you think you can't draw? Yes, because it's been proven to reduce the stress hormone cortisol. 
Making meaning of a caring life can be so hard, especially if you are limited to your four walls and if your loved one has lost the capacity to communicate. But looking at your every day surroundings differently can 'convert your loved one to an icon' and the ordinary into the extraordinary. Those are good enough reasons to experiment with art at home.

Sunday, 22 April 2018


I'm just back from a truly inspiring conference hosted by the Asset Based Community Development Institute (or ABCD) and their Canadian partner, Deepening Community at the Tamarack Institute. 

The conference was titled "ABCD For Healthy Neighbourhoods" and what I learned from John McKnight, Cormac Russell, Al Etmanski and Paul Born (they are the ABCD Faculty) changed the way I think about our caregiving community.

The organizing principles of ABCD  have the potential to change the way we give care in communities. It's an approach that utilizes US - OUR talents and skills as force multipliers. Of course we will continue to rely on medical and paid services to be part of our family care picture, but the strength of our natural care community helping each other in an organized fashion builds a GOOD LIFE. A service doesn't build a good life.

In the family caregiving community, we have ASSETS:

  • Individually and collectively, we are wise, resourceful, loving, resilient, courageous and generous. 
  • We have a massive knowledge base about how to find care and give care. When we mobilize that knowledge base in local communities or online (sometimes online communities ARE our local communities), we crowd-source to solve health and family problems almost instantly using collective experience. 
  • We are supportive and we are great listeners. When a fellow caregiver is in distress, we gather around (we bring food if we are in the vicinity) and we sit with our fellow carer in a protective and empathetic group. In this way, we are like elephants who respond to calls of distress by grouping around an injured member of the herd, forming a cocoon of protection.  

Caregivers have SKILLS:
  • We know how to navigate complex health care systems and home care funding mechanisms. If we don't have the information ourselves, we ask another caregiver.
  • We know how to manage paid care in the home, so we become expert at human relations including developing training tools, strategies to supervise staff, and techniques to ensure the safety and happiness of our loved ones.
  • We are expert in developing relationships that work to get what we need from medical and social care professionals. We always say thank you and we remember birthdays and children's names of our professional team members.  We are masters of soft diplomacy. 
  • Our research skills rival those of NASA
  • We are expert multi-taskers.
Caregivers learn quickly that support and information can be found in groups of others who share a similar caring experience on the home front. Together, we form a movement of natural caring. We have power. I urge our community leaders to think about how to organize and utilize that power. How can the skills and assets of local groups of families be leveraged for better health and a collective easing of the burden of care? "What can we do together?" is the question. 


1) Peggy, a widow, struggles to keep up with the maintenance of her house in downtown Detroit. She has a garden but is too frail now to tend it. Rats have taken up residence in her weeds and social services have called on Peggy more than once in an effort to assess her for placement. She is now reluctant to answer the door. A community organizer matched Peggy with a nearby immigrant family who were living in small quarters with two young children. The family expressed regret that their children had nowhere to play and about a wish for a garden to grow their own vegetables. Peggy was introduced to her new neighbours and they became friends. The family now tends the garden and cooks for Peggy. The children call Peggy 'Nana'. 

2) In the city of Edmonton in Alberta, Canada, an organization called Abundant Community goes door to door with a short questionnaire. 1) What is your vision for our neighbourhood? 2) What are some activities and interests you would enjoy with neighbours and would you want to assist with any of these? 3) What are the skills, abilities or experiences that you would be willing to share with other members of our neighbourhood? I can envision the results of a neighbourhood questionnaire such as this one being used to share respite, food, hobbies, driving and just keeping company for the good of families giving care.

3) Here is a wonderful list of gifts and assets that vulnerable people bring to their communities. If you believe that you and your loved would have nothing to contribute that others would value in your neighbourhood, read THIS LIST - everyone has valuable assets. 


Call your neighbourhood association or your city government offices. Ask them if anyone is doing 'Community Organizing' using Asset Based Community Development principles. If someone is doing this work, ask how they are including the needs and assets of families giving care. If they don't know about ABCD, share this post with them. Share this with your case managers and hospital patient experience folks, too! 

Caring families, let's get organized. It's as easy as ABCD.