siblings

Activism begins at home

November 18, 2024 by Franke James

My thought today is that activism begins at home! We may think activism is all about crowds marching in the streets with placards waving and megaphones blaring. But the first opportunity is at home with our families.

In our private decision-making, when nothing is public yet, threats to civil and human rights can happen too easily. Ask yourself, would you stand up to your family to protect your sibling’s right to be different? To be Gay or Transexual or Disabled—and free to make their own choices?

My sister Teresa and I were honoured to appear on Cruisin’ Cripples podcast, Pushing for Change, to talk about activism. But sadly, speaking up to our own family wasn’t enough. I had to take action to protect Teresa—which is what my memoir Freeing Teresa is all about.

On Family Activism

An excerpt from my podcast interview with host Kevin Brown:

K.B.: It’s an amazing story… You had already agreed that you were going to take your sister in. Why do you think that was not a viable option for your siblings?

FJ.: Well, I think there are two things. There were power issues. My sister, Deirdre (pseudonym), was older than me, and who was this young sibling who was saying, no, it’s not going to work… And there was a whole group of people surrounding Teresa who said that she had to go into a nursing home. And the other reason was it was a free ticket for life. Teresa would’ve had her healthcare and room and board covered. But at what cost? It was so limiting to be in an institution. I was just horrified.

K.B.: Certainly… So, I know Teresa is not the only one who has experienced something similar. So what is the alternative? If someone can’t care for them, they go into an institution.

“There are many options.”

FJ.: There are many people with Down syndrome (which Teresa has) who are helped by the system to live in the community… The Canadian Charter says that we’re all equal. The UN Convention on the Rights of People with Disabilities says they have the right to live in places of their choice. And yet Teresa wasn’t given that choice. Initially, I thought that Teresa was the lone exception being pushed off to a nursing home. And over the years, I’ve learned that there are many thousands of “Teresas” across Canada and the U.S.A., and even worldwide. The UN calls it a massive human rights violation.

Activism in action: Getting the government apology

K.B.: I know you had a Change.org petition and got an apology letter.

FJ.: Yes. But let me tell you about that activism… On March 21st, Teresa launched the Change.org petition, calling for human rights to be respected and the government to say sorry, and we got an outpouring of support, 25,000 people. Lovely comments. Wonderful. If anybody is ever in a position to sign one of these petitions, please do. It makes an enormous difference.

Teresa's Change.org petition launched on Mar 21,2014 which is World Down Syndrome Day. In the video Teresa tells how the government took away her right to decide where she lived, and put her into a nursing home. Teresa asked the government to say sorry because it was wrong.

Unfortunately, the government didn’t pay attention in 2014. So even though we got so many signatures, it took another two years of activist campaigning and more media attention to put their feet to the fire and get the Ontario Minister of Health to apologize to Teresa on TV on her birthday, July 22nd, 2016.

K.B.: Well, if one could ask for a birthday gift, that would be the highest of gifts received.

The Minister’s apology on TV in 2016

Global News shone the spotlight on Teresa. The driving force for this written apology came from Global News. Journalist Christina Stevens was determined to get answers on how this travesty happened to Teresa.

Stevens did a two-part news story about Teresa: “Ontario woman forced into long-term care wants apology from provincial government.” She did some remarkable digging to find out how many other people with developmental disabilities are in long-term care. She discovered that Teresa is just the tip of the iceberg. There are more than 2,900 “Teresas” living in Ontario long-term care facilities.

Stevens pressed Minister Hoskins for an apology for Teresa. Minister Hoskins sent a statement that was aired on Global News on July 22, 2016: “I would like to apologize to Ms. Pocock and her family for her being placed in a seniors residence…”

Teresa’s Activism resulted in an official letter!

Teresa's handwritten letter opposite the Ontario Minister's letter of apology. Teresa Heartchild's letter to Minister Hoskins Sept 23, 2016: Dear Minister Dr. Hoskins, It was nice that you apologized on TV for putting me into a nursing home. But it's weird that you have not sent me the apology in writing. Did you forget? Please send me a letter. I did not want to live in a nursing home. I am capable. I am an artist and a poet. My book is “Pretty Amazing” and totally amazing. Sincerely,Teresa Heartchild. | Minister Hoskins Letter - Dear Ms. Teresa: Thank you for writing to me and for sending me a copy of your delightful book, Pretty Amazing. I would like to apologize to you and your family for your unsatisfactory placement experience. Your sister, Ms. Franke James, also wrote to me on your behalf in February 2016. Her passion and commitment to your well-being is evident in the extensive materials she had prepared, as well as the photos she provided of you enjoying life in British Columbia. I can appreciate that your experience was challenging for you and your family. We continually strive to improve people's experience in Ontario's health care system to ensure that the right care is provided to Ontarians when and where they need it. Issues raised by your experience that your sister brought to my attention, as well as to the attention of the Select Committee on Developmental Services in January 2014, are very important. Thank you again for taking the time to write and for your wonderful gift. Yours sincerely,Dr Eric Hoskins, Minister

Listen to the full podcast on Spotify

Feedback: “Incredibly moving. A must-listen”

“I just finished listening to the episode featuring Franke James, and it was incredibly moving… This episode is a must-listen for anyone interested in human rights, family bonds, and the strength of the human spirit. Highly recommend!” S. H.

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!

Q&A with Franke James

September 12, 2024 by Franke James

Franke James with her sister Teresa at the Inclusion BC 2024 conference, Nanaimo, BC

“Last month, I had the pleasure of reading Freeing Teresa by Franke James – a moving, emotional and powerful read about doing what’s right, no matter how difficult it may be. I’m so thrilled to be sharing a recent Q & A with Franke where she talks about Teresa, her books, and the hurdles she had to overcome to get this book published.” ~ Emily Quinn, A Quintillion Words

Emily Quinn’s interview with Franke James

In your own words, how would you describe Teresa? What is your favourite memory of her over the years?

FRANKE: There are so many! Here are just two memories. When Teresa was a toddler, I would tag along with my Mom and watch Teresa take personal training lessons. By age five, she was climbing the gym ropes. That was an eye-opening lesson for me that Teresa could accomplish amazing things with patience and perseverance.

*Teresa climbing the gym ropes, 1969. Photo by Teresa’s mother*

As an adult, one watershed moment was when Teresa did her Change.org video. Previously, as a person with Down syndrome, she was not given any respect to direct her own life. In the 2014 video, Teresa marches along confidently, saying that she is “a female with Down syndrome” and wants the government to “say sorry” for taking away her right to decide, and putting her in a nursing home. It made me proud to see Teresa speaking up for herself. Since then, I’ve had many glowing moments as I’ve watched her blossom as an artist, author, and self-advocate. Finally, she is free to be herself.

Teresa's Change.org petition video which launched on March 21, 2014 — Teresa’s Change.org Petition Video, March 21, 2014.
Filmed in Victoria, B.C. by Billiam James

**When did the idea of writing Freeing Teresa come to you? Were you experiencing a certain hurdle? Or did you always know you wanted to write about it one day?**

FRANKE: Over a decade ago, I imagined that one day, I would write about what was happening to Teresa, my youngest sister. In 2013, all of my other siblings were intent on putting her into a nursing home. I was horrified and objected. However, one sister justified the group’s decision by saying that the government care agency had assessed Teresa, and taken away her right to choose where she lived. Another sister said Teresa was on the verge of Alzheimer’s. They all claimed she needed 24/7 care. I didn’t believe a word of it. Instead, I believed in Teresa. I saw her as being the same as she always was and enjoying life.

*Franke and Teresa in the Terry Fox event, 2011. Photo by Billiam James*

Did you find it difficult writing about your family, specifically some of your siblings? Is there anything you regret?

FRANKE: I regret that we lost our family. It’s a terrible blow, but sadly that was the price for standing up to the group and freeing Teresa. It was challenging to tell this story, but the hurdles forced us to find creative solutions. Since my family still doesn’t want to talk about this misadventure, I’ve given my siblings pseudonyms and whited out their images in photos. Also, Teresa is using a Pen name. These techniques have given me the freedom to tell this story and also gave a distinctive look to the book.

*Bill and Franke host a summer dinner party for two of her sisters and their spouses in 2013. Photo by Franke James*

People have come up to me after my book talks, and confided that they know a young person who has been put in a nursing home. This growing awareness is so important. The statistics show that Teresa is the tip of the iceberg. She is just one of many to have experienced forced care. It is happening to people with disabilities around the world. Nursing homes have become the new Institutions.

Franke James led a panel called, “The Quiet Reinstitutionalization: Young People with Disabilities in Long-term Care.” Inclusion BC 2024 conference

Did you give your siblings advance warning of this book?

FRANKE: Yes, I gave them over ten years warning! Ample time for them to apologize to Teresa. But there’s been no apology yet. Of course, they also told me they’d never read my book. In 2013, on the same day we rescued Teresa, I told my sister, Siobhan, “If you block us on this, we will be taking this public. We’re going to go to all the different advocacy organizations. And we are going to make a really big deal of this. Because this is not right.”

Unfortunately they did block me, which I’ll talk about in the next book. Four days after we rescued Teresa, armed policemen came to my door to take Teresa back to the nursing home. Holey Moley, it was a very scary time. Fortunately, with legal help and documentation, we were able to assert Teresa’s right to stay with us.

How long did it take you to write Freeing Teresa, including writing, editing, any research and sourcing photographs?

FRANKE: A long time! In the actual moment, I made a record of the events that were swirling around me. (I learned this from my work on www.officepolitics.com.) I wanted to make sense of what was happening. But, as it turned out, all my emails, journals, photos, videos, and audio recordings, have become essential material for my book.

In 2020, when Covid hit, I started to write Freeing Teresa in earnest. Luckily, my husband, Billiam James, came on-board as the co-author, and we worked together to get the book written and published. Every week we’d sit on a park bench overlooking Lost Lagoon, in Stanley Park, and read a chapter to each other. It was fun and improved each chapter immensely. We published the print book in October 2023.

What is your favourite book? Is there a specific author or person who inspired you?

FRANKE: If I can only pick one book, I would say it has to be ENTWINED by Joyce Scott, published in 2016. Remarkably, Joyce rescued her twin sister, Judith, from an institution where she’d lived for 35 years. Their story was very inspirational to me, coming three years after Teresa came to live with me and my husband. Joyce’s book Entwined has some parallels to Freeing Teresa in that we’re both authors who have written memoirs about our sister’s with Down syndrome. Both of our sisters were trapped in the “care system” and we helped them get out. And both our sisters turned to art to express themselves. Judith Scott became a famous fibre artist and her art now hangs in the MoMA. It is a fascinating heart-warming story!

If you could tell a past version of yourself some advice for the future, what would it be?

FRANKE: Well, it could be something my mother tried to teach me when I was a cocky teenager, but I didn’t fully appreciate at the time. I used it in a dedication to my Dear Office-Politics book. I think she was very wise.

“Read between the lines.
Never take people at face value.
Listen to what people say, but watch what they do.
Put yourself in the other person’s shoes.
Never feel sorry for yourself.”

Tell us about your previous books and what you’re currently working on.

FRANKE: Since 2009, I’ve published three other books. They are all very different—and yet they were essential training for Freeing Teresa. Bothered by My Green Conscience taught me how to fight City Hall and win. Dear Office-Politics taught me to practice making ethical decisions—so I wouldn’t get run over by an ethical dilemma. And Banned on the Hill taught me many things, but how to use F.O.I. tools to dig for evidence was so helpful in Teresa’s case.

Our latest exciting news is that we have just published the audiobook for Freeing Teresa! It features a full cast of over a dozen actors, including Jackie Blackmore, Dayleigh Nelson, and Lauren Potter (of GLEE fame). Two of the actors have intellectual disabilities, which means we have “authentic representation” — something that is very important to me. It was a very ambitious dream to do the audiobook — and a full-cast one at that! Now the audiobook elevates my memoir to a whole new level. The full-cast of actors brings our true story to life in dramatic and exciting ways. I’m so happy we had the courage to do it.

Advertisement for Screen International Magazine, September 2024 with video image of Franke James during the rescue on Nov 30, 2013 and Teresa sitting the nursing home bed, blowing a whistle — Advertisement for Screen International Magazine, September 2024

Is there any advice you would give to a person with Down syndrome or anyone who cares for them?

FRANKE: Dream big! Assume that you can do anything you set your mind to! That’s good advice for the person with Down syndrome and also for the people who support them. If we have positive expectations for people with Down syndrome, we’ll give them abundant opportunities throughout their lives. And amazingly, these positive assumptions can become reality, like they have for Teresa Heartchild who was named a Champion for Change by B.C.’s Human Rights Commissioner.

Teresa's Video asserting that people should assume that she can do something — Franke’s post: https://freeingteresa.com/assume-that-i-can/

About the author

The spark for Franke James’ newest book, “Freeing Teresa,” was lit ten years ago. In 2013, Franke and her husband, Billiam James, helped her younger sister get out of a Toronto nursing home, regain her decision-making rights, and get a public apology from the Ontario Minister of Health.

Earlier that same year, Franke had published Banned on the Hill, which led to her winning the BC Civil Liberties Award for Excellence in the Arts in 2014. Her related poster campaign, “Do Not Talk About Climate Change,” appeared in three Canadian cities and Washington, DC. In 2015, Franke was awarded PEN Canada’s Ken Filkow Prize for “tenacity in uncovering an abuse of power and commitment to fostering a national conversation in the face of censorship.” Franke lives in Vancouver, BC, with her husband and her sister, Teresa.

Winner of Four Firebird Book Awards (and Judges’ Pick) on Speak Up Talk Radio!

July 27, 2024 by Franke James

“Freeing Teresa is all about the need to speak up, so I’m thrilled to have my true story win four Firebird Book Awards plus the Judge’s Pick,” said Franke James. Patricia Rullo is the brains behind the Firebird Awards. The awards programme has recognized many ground-breaking literary works and also benefits a charitable cause, homeless shelters in the USA.”

Firebird Award Certificate given to FREEING TERESA for the Judges Pick, 2nd quarter 2024; 1st place, Social/Political Change; 1st place, Special Needs; 2nd place, Leadership; 2nd place, Inspiration

“Teresa’s story is important because, as an adult with Down syndrome, she represents just one of many people with disabilities,” said Franke James, “While the old institutions have been closed, today there are thousands of young people with disabilities who are forced to live in nursing homes. Why is that? This is a key civil rights issue for all people with disabilities—the right to decide where you live.”

FIREBIRD BOOK AWARDS HONOURED ‘FREEING TERESA:
Judges Pick, 2nd quarter 2024
1st place, Social/Political Change,
1st place, Special Needs (Disability Rights)
2nd place, Leadership
2nd place, Inspiration

Congrats Teresa Heartchild and Billiam James!

Update, August 29, 2024

Pat,

Thanks for your Firebird Awards! As the winning author of the Judges’ Pick Award (in Q2), the sponsor interviewed me today! Hooray! I had a great conversation with Dr. Audrey Tang [@draudreyt]. She covered a lot of territory, and we had such a warm chat about my book Freeing Teresa, the need for social change and fighting discrimination. Such a great opportunity! Thank you! (The show will air at the end of September.)

Franke

From the press release: Authors and publishers worldwide submitted their work to the International Firebird Book Awards. The panel of judges includes 27 individuals with diverse backgrounds and experiences. Two judges from a select panel read and scored each entry. All judges commit to a set of standardized criteria that evaluate the quality of the writing and the production aspects. The judges only award the coveted Firebird to entries with the highest scores.

#bookawardwinner #awardwinningbooks #firebirdbookawards #firebirdbookaward #speakuptalkradio #downsyndrome #DisabilityRights #leadership #inclusion #memoir #siblings #caregiver

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