#caregiving

Teresa’s Top Ten Countdown

October 26, 2024 by Freeing Teresa

Teresa at home in Vancouver, wearing a big smile and a favourite I Love NY shirt

Ten Years of Celebrations!

Yes, it has been ten years! The book, Freeing Teresa, tells of Teresa’s narrow escape from an end-of-life nursing home. Four of her older siblings insisted she needed to live there, but Teresa (and Franke) didn’t listen to them. Teresa is feisty and not someone who likes to be bossed around. Proving the naysayers wrong, she has lived successfully in the community for over a decade. And she is celebrating all the wonderful things she has done in this Top Ten Countdown from 2014 to 2023! (Thankfully Bill and I believed all along that Teresa had many places to go, things to do, and people to meet.)

Teresa celebrated the ten year anniversary with a glass of champagne! She is wearing pink glasses, a tie-dye shirt and ball cap

Teresa celebrated her ten year anniversary of freedom with a well-earned glass of champagne!

Here is our top ten countdown…

TEN (10) Birthdays

Teresa leans forward and blows out the candles on her 2023 birthday cake. She is surrounded by colourful helium birthday balloons.

Photos of Teresa blowing out birthday candles in 2014, 2015, 2016, 2017, 2018, 2019, 2020, 2021, and 2022

Ten birthdays, starting with the Big Five-Oh (50) on July 22nd, 2014. Then it was like playing dominoes, successfully knocking down 51 and 52, then 53, 54, 55, 56, and into the home stretch 57, 58, and bango! The 59th in 2023! Every year was great. How the years flew by! Congratulations Teresa! You did it with style—and we know that your Six-0h (60) will be just as amazing!

NINE (9) Tie-Dye Sweat Shirts. At least!

Teresa in nine different tie-dye shirts collected through the years

Over the years, Teresa has totally transformed her wardrobe, turning herself into a colourful superstar! She currently has at least nine tie-dye shirts in her room and has worn many more over the years. By the way, Teresa has also developed a passion for I ♥️ NY T-shirts. She has a half-dozen of those, too.

EIGHT (8) Medical Emergencies

Top Ten Countdown includes eight medical emergency photos from two hernia surgeries, two broken ankles, two dental surgeries, one blocked esophagus, and one nuclear octreotide scan — a cancer scare, but luckily, Teresa got the all-clear.

Two hernia surgeries, two broken ankles, two dental surgeries, one blocked esophagus, and one nuclear octreotide scan — a cancer scare, but luckily, Teresa got the all-clear.

SEVEN (7) Agencies Working Together

The Top Ten Countdown includes seven agency photos showing the fun support they provide and the warm relationships she's built

Teresa is receiving great support from the disability community and service agencies in BC. Spectrum Society for Community Living is her lead agency, and their team is doing a fabulous job. Teresa is also getting lots of support, advice and friendship from Inclusion BC, PLAN, Down Syndrome BC, Community Living BC, Canadian Down Syndrome Society, and Inclusion Canada.

SIX (6) Hundred Chicken Pies

Teresa loves chicken pies and eats, and draws them, and writes poems about them in this Top Ten Countdown

Who knows how many chicken pies Teresa has eaten over the last ten years? She loves chicken pies, starting with home-baked ones from Thrifty’s, to frozen no-chicken pies from Amy’s, to her current favourite, Costco chicken pies!

FIVE (5) Arts Grants

Teresa celebrating her five arts grants in this Top Ten Countdown

Teresa has earned two Canada Council travel grants, two DTES Small Arts Grants from the Vancouver Foundation, and one arts support grant from Spectrum Society. All this helped Teresa write and create two books, exhibit her art in three solo shows, participate in five group shows, show her videos at three film festivals (winning one silver award!), and travel to international exhibitions in Boston and Mexico.

FOUR (4) Vocations

The Top Ten Countdown wouldn't be complete without mentioning the four vocations Teresa has found: poet, self-advocate, artist and author.

Teresa has established herself as a poet, self-advocate, artist and author. The photos show Teresa speaking at the Carnegie Centre in DTES, marching for disability rights, holding up her artwork in her book Totally Amazing, and signing one of her books.

THREE (3) Amigos

photo of Teresa, Franke and Bill from Teresa's art show, Born to Represent.

Teresa, Franke, and Bill have lived together for ten years and have become great friends. “The Three Amigos,” as Teresa calls the trio. The photo is from her solo art show, Born to Represent, which was hosted by PLAN.

TWO (2) Sisters

Teresa and Franke hug in this photo taken at their home in Vancouver

Teresa and Franke have grown closer every day. And now their bond of sisterhood and love is ten years strong.

ONE (1) Champion with an Extra Chromosome

Teresa smiling confidently in this photo taken by Franke James at breakfast one morning

Teresa is very proud of the fact that she has Down syndrome and has become a strong advocate for disability rights. In fact, the Human Rights Commissioner of BC has named Teresa a “Champion for Change” for her advocacy work.

Happy Tenth Anniversary

Teresa and Franke celebrate their tenth anniversary together at the Top of Vancouver, the city's revolving restaurant, in December 2023. The dessert says Happy 10th Anniversary

Teresa and Franke celebrate their tenth anniversary together at the Top of Vancouver, the city’s revolving restaurant, in December 2023. Hooray!

What a countdown for a fun decade from 2014 to 2023!

My sister was sent to a nursing home against her will

May 17, 2024 by Franke James

Teresa Heartchild at the 2020 Inclusion BC retreat for people with developmental disabilities and their families to learn about rights. Teresa is smiling at the camera and holding her badge up. She is a white woman with Down syndrome wearing round wire glasses, a grey down vest, a tie-dye sweatshirt, and a backwards ball cap. Photo by Franke James — Vancouver artist and self-advocate Teresa Heartchild at Inclusion BC’s planning retreat at Loon Lake, B.C. in February 2020.

We fought and won, but thousands of others aren’t so lucky

By Franke James

My sister’s life was written off ten years ago with the stroke of a pen—just like thousands of others with developmental disabilities.

Teresa has Down syndrome, and she was 49 when the capacity assessment took place in Ontario.

I saw her as happy, healthy and active, enjoying living nearby with my 91-year-old father, who often said, “We’re a team. We help each other.”

But that’s not how the social worker saw her.

Teresa did not say, “No”

Teresa didn’t understand what the assessment was for, and according to the records, she did not agree to be tested. But, she did not say, “No.” So the social worker asked her about her “activities of daily living.” When Teresa said that she could shower and dress herself, he concluded that her claims of independence were evidence of her “cognitive deterioration.” Others had told him she couldn’t do these things. Then, he ticked the “not capable” box on his form.

Teresa immediately lost her right to decide where she lived.

When I first heard this, I was shocked. What about her human rights? Wasn’t her right to live in the community protected by the Charter or the UN? Article 19 of the UN Committee on the Rights of Persons with Disabilities states that persons with disabilities have the right to live in the community, have the right to choose where they reside, and should not be isolated or segregated. And yet, these declarations didn’t protect Teresa.

Human rights violation on a massive global scale

Three years after Teresa’s assessment, a news exposé revealed that 2,900 young people with developmental disabilities were in nursing homes in Ontario.

Across the border, Disability Rights New Jersey reported in 2023 that more than 2,000 young people with developmental disabilities were in the state’s long-term care “contrary to their wishes … because the state does not properly evaluate their needs.” Just like Teresa.

Last year, the Premier of Nova Scotia apologized to citizens with disabilities for the “historic, systemic discrimination” which denied them the right to decide where they lived. The UN’s Special Rapporteur, Catalina Devandas-Aguilar, wrote, “the deprivation of liberty on the basis of disability is a human rights violation on a massive global scale.” This injustice is widespread but few people know about it.

Nursing homes have quietly become dumping grounds for people with developmental disabilities.

Teresa’s plight is just like thousands of others

Imagine how it is for thousands like Teresa. Since she had lost her right to decide where she lived, Ontario’s care agencies and two of our siblings decided for her. Teresa was admitted as a “crisis placement” to a nursing home—despite my offers to have her live with me. She was shocked. I was horrified. And our father, her primary caregiver, was heartbroken. Teresa was trapped, unable to get out without external help.

I heard many excuses: There aren’t enough group homes! Teresa’s been on the waitlist for five years! A bed in a nursing home is not great, but it’s not terrible. The government will pay for everything! Paired with the unspoken assumption, What kind of future will she have anyway?

Four days after Teresa was put in, I went to the nursing home with my father, who signed her discharge, and Teresa was released “against medical advice.” Teresa moved in with me the next day.

Ontario’s system failed Teresa

I was appalled that the system had failed Teresa. I wanted Ontario politicians to hear her story and make sure it didn’t happen to anyone else. Two months later, Teresa and I appeared before Ontario’s Select Committee on Developmental Services. They were conducting hearings around the province. We told Teresa’s story by weaving her pictures and health records together. I said, “Teresa is an active, strong-willed and able-bodied adult. Teresa should never have been admitted to a nursing home.”

At the end of our testimony, the vice-chair and then-MPP Christine Elliott said to me, “I think I can speak for all of us on the committee when I say that this is a truly shocking story that you have told us today.”

“Long-term care homes are pressured…”

The committee’s final report, published July 22, 2014, said: “Long-term care homes are pressured to accommodate young and middle-aged people with developmental disabilities without any medical need for this type of care or any training to support this group of clients.”

It has been 10 years since Teresa was discharged, and she is thriving. Her artwork is now on a T-shirt celebrating World Down Syndrome Day 2024.

The system bungled Teresa’s assessment

The system bungled Teresa’s assessment, and she narrowly escaped. But Teresa fought back and got her rights restored. In 2014, on World Down Syndrome Day, Teresa said, “It’s my human right to decide where I live.” She asked the government to “say sorry.” Two years later, Ontario’s Minister of Health publicly apologized to Teresa.

Despite sounding the alarm 10 years ago, thousands of young people with developmental disabilities are in nursing homes today, and more are being funneled in. That’s not fair. Nursing homes aren’t intended for people who have decades of life left.

Most vulnerable people, including those with developmental disabilities, can’t fight back against a system of forced care. Existing laws are not preventing this tragedy. We need education about ableism to change social attitudes and be genuinely inclusive.

Franke James is an award-winning activist, artist, and the author of ‘Freeing Teresa: A True Story about My Sister and Me.’ She lives in Vancouver, B.C., with her husband and her sister, Teresa.

Demand and Disrupt: I Am Alive

April 23, 2024 by Franke James

Image of Author Franke James smiling and wearing a black hat is beside a copy of her book Freeing Teresa which has an orange cover. — Author Franke James and her book Freeing Teresa

I was recently interviewed by Lisa McKinley for the Demand and Disrupt podcast which is produced by the Advocado Press and the Center For Accessible Living in Kentucky. Disability activist Mary Johnson’s exceptional book, Make Them Go Away, is what first connected me to Advocado Press and all the great things they are doing. When I first heard the title of the podcast, it struck me as so appropriate for a disability show! Demanding and disrupting is exactly what is needed for a fairer society accessible to everyone. So, I had a great chat with Lisa, which is excerpted below. I hope you enjoy our conversation and it inspires you to listen to more episodes and also read Freeing Teresa!

Episode 26: I Am Alive
On this episode of Demand And Disrupt, Lisa McKinley speaks with Canadian author Franke James about her latest book, Freeing Teresa, a true story of heartbreak and triumph. (Listen to the full podcast here.)

Lisa McKinley: Hello, welcome to Demand and Disrupt.

Franke James: Thank you Lisa for having me on. Freeing Teresa is a true story about my sister and me, and it’s taken 10 years to write. It’s about helping my sister Teresa get out of the nursing home that she was put into in 2013 and speak up for herself.

Growing up with Teresa

Lisa McKinley: Many of us don’t have the pleasure of knowing or loving someone with Down syndrome. Can you tell me what it was like growing up with Teresa?

Franke James: Well, when my mother—this was back in 1964 when Teresa was first born—was telling me about my new baby sister, she said that Teresa had some health challenges. She said that Teresa had a heart condition that might require surgery. And I was very, very upset. I was only a little kid at that point.

And then she said, “Teresa also has Down syndrome so that she won’t be like the rest of us.” I didn’t know what that meant, but my mother said that they would bring Teresa back home, and she would be part of the family. She would participate the same way as any of us and be showered with all the same love.

My mother believed in full inclusion

Franke James: My mother was a great champion for Teresa. Back in 1964, she had Teresa working with a personal trainer to help develop her muscles. By the time Teresa was four or five, she was able to climb the gym ropes. Just totally remarkable.

Teresa, at four years of age, full of spunk and energy on the gym ropes | March 1969

Also remarkably, Teresa went to the same school I went to. I was really inspired by Teresa and by my mother’s approach to helping Teresa to be included in all things. And I remember when she was just an infant, and I would stand outside the gym doors and Teresa would scream bloody murder. And I thought, “Oh mom, you’ve got to stop the lessons. It’s hurting Teresa.” And my mother would say to me, “No, no, no, it’s good for her.” She persevered. And Teresa was not in any pain at all. She was just learning how to do the exercises.

Lisa McKinley: I love that. God bless your mom because we need people like that.

Helping Teresa get out of the trap

Lisa McKinley: Teresa was put in a nursing home back in 2013, and you helped her get out. Can you tell me about that day?

Franke James: Yes. I was so shocked that Teresa had been put into the nursing home because I’d been trying to persuade my siblings that it was a bad idea and that we should find a way for Teresa to live in the community. She’d been successfully living with my dad for 49 years. But they decided that they would take Teresa out for breakfast. And then they put her into the nursing home without telling Teresa or my dad what was happening. And I was so upset when I heard. So I talked to my dad, and I said, do you want to get Teresa out of there? And he said, “Yes, it’s a terrible thing that she’s there.”

Four days after she was put in, we helped my dad go to the nursing home. We asked to see Teresa, and saw that she was in a shared room. We sat there for hours asking if we could see the admission papers that had gotten Teresa put in. And the nurses came in and out, perhaps wondering what’s going on? Why are these people here asking for the admission papers? But eventually we got them. My dad, who was a retired lawyer, was able to see that he was still senior power of attorney on the forms and that gave him the power to sign Teresa out. And so I checked with the disability lawyer that we had on call and he said, “Yes, you can sign Teresa out. Just tell them what you’re going to do.”

Discharged against medical advice

So we went to the front desk and talked to the CEO on the phone. And we talked to the nurse in charge. They said that we could take Teresa out but she would be discharged against medical advice—because they still believed that Teresa had to stay in the nursing home. God bless my dad, he just signed the forms and said, we’re taking her out. We were so thrilled. But just as we were leaving, we heard that my sister, who I called Deirdre in the book, was coming down and wanted us to wait until she got there, however we weren’t waiting. We hopped in a cab and we went back to my father’s condo to celebrate that we had gotten Teresa out. We were so happy.

Stopping the train driving Teresa into long-term care

Lisa McKinley: Now, before Teresa was placed in the nursing home by your siblings, you actually told them, “I would like to take Teresa home with me to live with us,” but they went ahead and had Teresa placed in the nursing home. Why do you think they did that?

Franke James: When Bill and I came up with the idea that we would take Teresa into our home, it was to stop the freight train that was driving Teresa into the nursing home. We thought this would do it. We weren’t going to take Teresa before, but we agreed to take her to stop the train that was putting her into long-term care. So we offered to take Teresa.

Unfortunately, my siblings just went ahead. I think I was seen as the little sister who was upsetting their plan. And when I go back to what they said about their reasons, they gave a lot of reasons why Teresa had to be in long-term care. But none of them made any sense to me. Things like, she needs 24/7 care. Well, she didn’t. We don’t have enough money. Well, that’s not a reason to put her in long-term care and they just go on and on.

A difficult but important story to tell

Lisa McKinley: In the book, you have a lot of the figures represented as white silhouettes. Can you tell us about that and why you chose to represent certain characters that way?

From the Dinner Party Chapter: Bill lights the candles with guests Siobhan and Jared, Phoebe and Spencer already seated for dinner. Original photo by Franke James, 2013. White silhouettes added for the book in 2023. — Bill lights the candles with guests Siobhan and Jared, Phoebe and Spencer already seated

Franke James: So this is a very difficult story to tell and I’ve had to consult lawyers about privacy issues. The reason that I’ve made my siblings as white silhouettes is to protect their privacy. I can have photos in the book which document what happened and the nice life that we were having. I can be in the photos, but the figures of my siblings are not in the photos; they’re silhouettes.

And they really represent a loss in my life and in Teresa’s life, too. Unfortunately, we are no longer in touch with my siblings. We could be in touch with them, but they would have to recognize that Teresa never had to be in a nursing home, and they haven’t recognized that.

Truth on the table

Lisa McKinley: Do you think it’s possible to reconcile with your family at some point?

Franke James: Well, I think we need truth and reconciliation. Anything is possible. But we need to have the truth on the table in order to have reconciliation. I’m happy that I believed in Teresa all along and she’s really flourished.

A portrait of happiness, Teresa in Victoria in 2014

And when I go back to that time, it was just a belief. It was a belief. I looked at Teresa and I saw a beauty in her and I saw energy and love and I didn’t understand what was happening to her, but I was sure that I could provide a wonderful life for Teresa. And thank God it’s happened that way. And she’s gone on to become a published author and to actually get an apology from the government for putting her into long-term care.

Teresa has been celebrated as a champion for change by the human rights commissioner here in BC. Many people are happy to see that Teresa has spoken up for herself, said that what happened to her was wrong, and pleased that she’s going to have a nice life.

How has Teresa enriched your life?

Lisa McKinley: I think it’s incredible that you all have found this wonderful life with each other. How has Teresa enriched your life? Because I know initially it wasn’t your plan for Teresa to come live with you. Initially, your brother was going to open his home to Teresa, but he decided against that and now Teresa lives with you, and I’m sure that has enriched your life in ways you never even thought possible. Could you tell us about that?

Franke James: Yes, it has turned our life upside down, but in many ways it’s improved it. So we were quite happy living in Toronto. We had a nice house, we had a nice business, we had nice friends, but when the shit hit the fan, we dropped everything and we decided to move west. Thousands of kilometers away from Toronto to the West Coast of Canada, Vancouver.

Teresa spoke out on Change.org and asked for an apology

Really, our lives revolve around Teresa. It is so inspiring that Teresa’s found her voice, she’s speaking up, she’s making art work, she’s letting us know what she thinks and feels. We see it every day.

Growing into becoming a caregiver

Lisa McKinley: I wonder if you would speak to some of our listeners who may be in that same situation. Maybe they have a loved one that needs more care than what they’re getting and there’s the choice to open the home to that loved one. What would you say to family members?

Franke James: Well, I had to grow in order to become a caregiver to Teresa. And I wasn’t really sure if I could do it. Now I brush Teresa’s hair, I put mineral oil in her ears at night time. I read stories to her and we draw on the computer. And these are all lovely things that I’ve grown into doing. But they’re not things that I initially understood that I would have to do.

So, I would say that helping someone vulnerable live in the community will enrich you a thousandfold. It may be very difficult to believe that that is true, but in my case with Teresa, it has been true. We’ve all blossomed and grown.

What’s ahead in the future?

Lisa McKinley: I know you have some really cool things coming up regarding your advocacy and things going on with you and Teresa. Can you tell me what is in the future for you all?

Franke James: Well, there are two things that I’m really excited about. One is we’ve got an audiobook coming out, and that is going to be so fun. It’s the Freeing Teresa audiobook. We have a full cast with over a dozen actors, two with intellectual disabilities. The actor playing Teresa is Lauren Potter, who is an American TV star better known for Glee. And we’re very excited. I think that this book is really going to be powerful to listen to because you’ll be able to hear all these different voices of the characters in the book instead of just me reading the whole thing.

Lisa McKinley: And I know you have some events planned. Can you tell us about that?

Franke James: Yes! Teresa and I are appearing at a panel at the Inclusion BC Conference in late May. The panel is “The Quiet Reinsinstitutionalization of Young People with Disabilities in Nursing Homes.” We have a couple of experts on the panel with myself and with Teresa, and we’re going to be talking about the problem. And I think that Teresa has such an important role to play because she is a living example of someone that this happened to 10 years ago, and it should never have happened.

Teresa’s self-talk poem: “I Am Alive”

Lisa McKinley: Franke’s right. It should have never happened. But the sad truth is stories like this will continue to happen without the support of strong advocates. So thank you Franke. We’d like to end today’s program by taking a few minutes to listen to a short poem. Teresa wrote about what it means to her to be free and alive. It is a poem of self-talk. Self-talk helps Teresa make sense of the world around her. And now here’s Teresa.

Teresa Heartchild: I AM ALIVE.

Hello.
Be nice to everyone.
Look, I am alive.
You have to be nice.
I am doing fine.
Thank goodness.
I have to be nice to them.
And to the others.
That’s a brilliant idea!
You’re thinking.
And I’m thinking too.
I think we need to make a list of the things we need.
Right. I’m alive. Nesters. Flying Pig. Prado.
We love it here.
Everybody loves me.
You guys are alright, I know.
You guys, I am born. I am alive.
Redeemed.
Okay, I am reborn.
In Gastown.

The Demand and Disrupt podcast is supported by the Advocado Press and the Center For Accessible Living based in Louisville, Kentucky. This excerpt of the interview has been condensed and edited for clarity.

“Our interview with Franke James about her book “Freeing Teresa” has been one of our most popular podcast episodes to date. The link to the episode has been shared more than any other.” Dave Matheis, Center For Accessible Living

Listen to Episode 26: I Am Alive

Siblings Canada interview with Franke James

February 18, 2024 by Franke James

A Sister’s Call to Action

Helen Ries, co-founder of Siblings Canada, summed up her reading experience of Freeing Teresa as “riveting.” She said it was a “call to action for siblings” for when our parents are no longer able to care for our siblings with disabilities.

A challenging story for all siblings

James’ rollercoaster story is challenging for siblings as it is about a crisis they may eventually face over the hot issues of housing, finance, human rights and family dynamics.

For the webinar, Franke and Helen were joined by psychologist Yona Lunsky. It was a unique interview, as each woman is a sister of a sibling with a developmental disability. (Teresa Heartchild makes appearances in the interview in surprising ways.)

Watch the video interview at Siblings Canada.

Franke James on getting the call to action

“When the big crisis in Freeing Teresa rocked our world, it was my call to action,” said Franke James. “That invisible sibling bond propelled me forward to help Teresa. Just as Helen Ries did so remarkably for her brother Paul. And U.K. author Manni Coe did for his brother Reuben. I think siblings are like Krazy Glue, and stories like ours show that we can be a force for good and transformative growth.”

“A very, very tough situation”

Excerpt from the Siblings Canada interview:

Yona Lunsky: So there’s a difference between providing care or making decisions for someone and then just really knowing someone and having that more fulsome kind of connection about that person and who they are day-to-day, and what matters. There are different ways we can relate to our siblings, aren’t there?

Franke James:
Yes. The thing is that it was a very, very tough situation to have all of my siblings with the exception of Teresa thinking that she should go into long-term care. And me being the one who says, “No, that’s not right, you can’t do that. What about her human rights?” But I just had to come back to the truth that I knew. And what I saw from my friendship with Teresa, and it was that she was healthy and she was active and she had a lot of things that she could do in her life and I wanted to help her. And my other siblings didn’t feel the same way.

Helen Ries:
What strikes me about your story, it feels very close to my story where I suddenly became my brother Paul’s carer in a crisis. And that seems to be also what’s happened to you. And I wonder if you can talk a little bit about that. What about that crisis made you change your mind about becoming Teresa’s carer? Because initially you weren’t ready to do that.

Watch the video interview at Siblings Canada.

Teresa Goes to the Dentist

February 17, 2024 by Franke James

Why a dental clinic for people with disabilities is so essential

Teresa Heartchild waits for her order at a busy restaurant

Happy Valentine’s Day! ❤️ A shoutout to all the #siblings, #caregivers and helpers out there! For most people, going to the dentist is not something we do for fun. My sister Teresa Heartchild feels the same way. Since I jumped into the role of a caregiver (over ten years ago) I’ve helped my sister go to the dentist many times. It always presents a whole bunch of challenges. Some of them can be met by explaining (in advance) why the visit is necessary, lots of good humour, and promising (edible) rewards! But convincing her also requires going to the right place. In Teresa’s case, that’s a dental clinic for people with disabilities. My story, “Teresa Goes to the Dentist,” is about our recent trip for a routine checkup.

Most dentists don’t have the patience for patients like Teresa

Experience taught us that it was necessary for Teresa to go to a specialized dental clinic. We found that most regular dentists don’t have the patience for patients like her! They’re on a strict time-clock and Teresa doesn’t abide by one. She demands a lot more time.

That’s because many little things are required to make Teresa comfortable and cooperative. (She’s even more wary of dentists since she had an infected tooth extracted last summer that required a hospital stay. Ouch!)

When we arrived for her routine visit, the hygienist explained to Teresa how she was going to clean her teeth. Then she patiently explained again—because repetition is often needed especially when it’s news Teresa doesn’t like. She got Teresa seated comfortably in the reclining dental chair. She let Teresa feel the bristles of the toothbrush with her fingers. Next she gave Teresa a hand mirror to watch what was happening. Teresa was relaxed throughout the whole tooth cleaning procedure. Then the dentist came in, peered at Teresa through dental loupes and gave Teresa the A-OK. Asked where she was going next, Teresa said happily, “The Flying Pig!”

So the cake helped, too!

Music by Kidcut
License code: KRZ9ZQJLRNBFIBAP

Advance Praise

October 24, 2023 by Freeing Teresa

“With characteristic courage and determination, Franke James took on the health care system and her own family to free her sister Teresa from a nursing home. By turns gut-wrenching and awe-inspiring, Freeing Teresa shows how the disability rights ideal of ‘nothing about us without us’ is the only way to make decisions about frail or aging family members. This story will break your heart and then fill it up again.”
Catherine McKercher, author of Shut Away: When Down Syndrome Was a Life Sentence

“An unshakeable belief in human potential”

“This is a gripping story about courage, love, and an unshakeable belief in human potential—about people who possess a rare combination of optimism with savviness about power, law, and human nature. Inspirational.”
Marty Seldman, Ph.D., WSJ Bestselling author of Survival of the Savvy

“Full of insight, heartbreak and inspiration”

“Full of insight, heartbreak and inspiration, Freeing Teresa offers a compelling glimpse into the experience of people with disabilities. This no-holds-barred story is a must-read for decision-makers, advocates, family members, and anyone who cares about disability rights.”
Karla Verschoor, Executive Director, Inclusion BC

“A must-read for anyone who cares about human dignity and equal rights”

“The battle to have Teresa be the best she can be—and to spend her life in a loving environment—is the heart of this book. A truly amazing story about an inspiring person and those who made it happen. A must-read for anyone who cares about human dignity and equal rights.”
George Melnyk, Professor Emeritus, Communication, Media and Film, University of Calgary

“Authentic, raw and riveting”

“Freeing Teresa is authentic, raw and riveting. It was an emotional roller coaster—one that will be very real for many disabled people. At its core, it’s about hope for a better life and resilience.”
Isabel Mavrides-Calderon, @Powerfullyissa, disability advocate

“A courageous, personal account”

“Franke James has written a courageous, personal account of fighting the system—and her family—to free her sister, Teresa, from forced care. It is a study in family dynamics and how individual perspectives, regardless of how ‘well-meaning’ they may be, can place our loved ones’ human rights at risk. Freeing Teresa reflects in microcosm society’s struggles to maintain appropriate supports for people with disabilities who need care, in the face of those who resent expenditures on the ‘unproductive’ amongst us.”
Alanna Hendren, Executive Director, Developmental Disabilities Association