#downsyndrome

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

Winner of the 2024 Human Relations Indie Book Awards!

July 11, 2024 by Franke James

“Freeing Teresa describes a beautiful bond between sisters impacted by the challenges of understanding disability rights through adulthood.”
Susan Peterson, Founder, Human Relations Indie Book Awards

Gold Award: Disability Rights (Special Needs)
Gold Award: Family Challenges
Silver Award: Inspirational
Silver Award: Leadership

DISABILITY RIGHTS (SPECIAL NEEDS): GOLD WINNER

Human Relations Indie Book Awards

Franke James, the author of Freeing Teresa stands beside her sister Teresa Heartchild who has Down syndrome and is a contributor to Franke's book. Teresa is wearing pink glasses, a tie-dye shirt, a backwards ball cap and smiling. Franke is smiling and holding up the framed 2024 Gold award for Special Needs from the Human Relations Indie Book Awards. Franke is wearing a painterly pastel dress, matching scarf and straw hat. Photo by Billiam James.

GOLD, Disability Rights (Special Needs): Freeing Teresa : A True Story about My Sister and Me

Teresa Heartchild said, “I won GOLD in 2024! Freeing Teresa is all about me!”

Teresa Heartchild has shown remarkable resilience and courage in the face of adversity. She wanted to make her own decisions about where to live but lost that right with the tick of a box. Sadly, due to other people’s low expectations for her future, Teresa was put in a nursing home. Teresa had to fight to get her rights back.

Freeing Teresa and its sequel, Escape to Lotusland, tell Teresa’s remarkable journey. In 2016, the Ontario government apologized to Teresa. She published two art and poetry books in 2016 and 2018 and was named a Champion for Change for all people with disabilities in 2019.

FAMILY CHALLENGES: GOLD WINNER

Human Relations Indie Book Awards

GOLD, Family Challenges: Freeing Teresa: A True Story about My Sister and Me

“Winning the GOLD Award in Family Challenges is deeply meaningful to me. When the Freeing Teresa events started a decade ago, they ripped our family apart. My late parents had given me an unshakeable belief in Teresa’s right to be included, and that fueled my passion to help her. All my other siblings, except Teresa herself, wanted her in a long-term care institution. Despite my offers to have her live with me, Teresa was put in a nursing home a few days later. My Dad (then 91), my husband and me helped Teresa to get discharged. And she won her freedom back. She has brought love and joy into our lives and has become a BC Champion for Change for all people with disabilities. These awards recognize our roller coaster journey of heartbreak and triumph.”

INSPIRATIONAL: SILVER WINNER

Human Relations Indie Book Awards

SILVER, Inspirational: Freeing Teresa: A True Story about My Sister and Me

“Teresa inspired us to fight for her right to a full life,” said Billiam James. “And remarkably, Teresa transformed our lives and opened many new doors.”

LEADERSHIP: SILVER WINNER

Human Relations Indie Book Awards

SILVER, Leadership: Freeing Teresa: A True Story about My Sister and Me

“We have many laws which should protect the vulnerable, yet don’t. We need everyone to speak up about these injustices.

“Freeing Teresa has been the hardest thing I’ve done in my life,” said Franke James, “I was lucky to have my partner, Bill, who believed as strongly as I did that helping Teresa was the right thing to do and would ultimately prove true.”

‘Freeing Teresa: A True Story about My Sister and Me’ by Franke James, Billiam James and Contributor Teresa Heartchild.

Available on Amazon, from bookstores, and in public libraries.

“It’s My Decision”

May 18, 2024 by Franke James

Teresa Heartchild at age 13 in a still from the documentary Exploding the Myth aired in 1979 shows Teresa writing in her notebook. She is white and has long brown hair and glasses. She has Down syndrome. Images and text used with permission from Community Living Ontario — Teresa Heartchild in the TV documentary, Exploding the Myth in 1979

Webinar: Protecting the Rights of People with Intellectual Disabilities

The story behind Teresa’s and my involvement in Community Living Ontario’s webinar goes back forty-five years to 1979 when the documentary Exploding the Myth aired across Canada—with Teresa in it. The film was produced by Community Living Ontario, which is hosting this webinar now!

TV listing ad for “Exploding the Myth” features thirteen-year-old Teresa wearing glasses and holding an exercise ball in her arms. Teresa looks at the camera with an expression of curiosity and wonder. Her lips are parted as though she’s about to speak. The ad text said, “Exploding the Myth. Thirteen-year-old Teresa [redacted surname] plays an important role in Exploding the Myth, a documentary special which explores the attitudes of a significant portion of the general public toward those who are mentally handicapped. Images and text used with permission from Community Living Ontario.

Exploding the Myth’s goal was to debunk false myths and expose pervasive negative social attitudes that limited the inclusion of people with intellectual disabilities. Teresa starred in the documentary to show how inclusion worked.

Teresa proved that the myths were false

“Myth: The intellectually disabled should be segregated in institutions. It’s best for them.” (Teresa lived at home.)
“Myth: Children with intellectual disabilities should not mix with normal children.” (Teresa went to the same girls’ school I went to.)
“Myth: People with intellectual disabilities are strictly limited in what they can do.” (Teresa was breaking barriers and starring as a role model for social inclusion.)

Teresa Heartchild at 13, doing her Swedish Ball routine in the documentary Exploding the Myth. She is wearing a white sweater and black pants. Images and text used with permission from Community Living Ontario — Exploding the Myth: Teresa, at 13, performs a Swedish ball gym routine.

Teresa’s happy lifestyle flew in the face of all the myths. She was living a normal life for a girl her age—which was a revolutionary act for people with intellectual disabilities. However, the myths still lingered and caused harm. There were 4,000 names on the waiting list in Ontario!

My parents were part of the deinstitutionalization wave in the 1960s

My parents were interviewed about their decision to raise Teresa at home. As Teresa bounced the exercise ball on camera, we hear my father’s voice—a time capsule from the past: “When Teresa was born, we had quite a number of questions . . . And we didn’t like the answers.” They said they would give her all the love and opportunities that their other six kids (including me) enjoyed.

Why our May 23, 2024 webinar is essential now!

Today, Teresa shows the importance of inclusion, but with a scary twist. In 2013, after living in the community for 49 years, Teresa was put into a nursing home against her will. Teresa didn’t want to live there and had to fight for her right to live in the community—a civil right that most people take for granted. (My memoir, Freeing Teresa: A True Story about My Sister and Me, goes into detail.) We’ll be explaining how we helped Teresa get out of forced care and regain her decision-making rights.

Stephanie Dickson, from PooranLaw, will talk about protecting the rights of people with intellectual disabilities—and how to increase their sense of control over their own lives. She will explain the drawbacks of guardianship and alternatives to it. The panel will discuss the dangers of capacity assessments and a person’s right to say, “No, thank you.” We’ll discuss these big questions: Why is “Nothing about us without us” critically important? How can we best support people during life transitions? How can we encourage people with intellectual disabilities to express their own choices? What do they want in their life?

How to protect rights and increase control for people with intellectual disabilities: a webinar by Community Living Ontario.

Join us and Community Living Ontario. Register for the Zoom webinar here: https://bit.ly/ProtectingRightsandIncreasingContro

Date & Time: May 23, 2024, 09:00 AM Pacific Time, 12 noon Eastern

Speakers:

Stephanie Dickson (Partner, PooranLaw)
Franke James and Teresa Heartchild (Authors of Freeing Teresa: A True Story about My Sister and Me)
Nicole Flynn (President, Council of CLO)

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

Tickets to Freedom

April 4, 2024 by Franke James

A True Story of Empowerment

The compelling saga of siblings in conflict over one sister’s disability and the right thing to do

Freeing Teresa: A True Story about My Sister and Me
“The result is more than a memoir: it’s a testimony to how ‘tickets to freedom’ are gained through fighting and love, displaying how Teresa’s own wishes and interests add fuel to the fire of empowerment on many different levels.”
D. DONOVAN, Sr. Reviewer, Midwest Book Review

Midwest Book Review (excerpt):

Franke and Teresa found themselves virtually alone. Standing against forces of medical, legal, and psychological systems bent on declaring Teresa incompetent and institutionalizing her for life.

Surprisingly, Franke’s work as an environmental activist and the lessons she learned from that job translated nicely to her efforts on her sister’s behalf. They provided a foundation of methodology, approach, ideology, and confrontation that served her well in her latest battle.

From decision-making empowerment and voting rights to navigating possibilities for Teresa, Franke’s interactions with her father and siblings provides a powerful set of discourses that examine ideals, realities, and the mix of special interests and perceptions that can create a perfect storm in a family.

Of particular interest are the points of contention that clearly outline different possibilities in acting and reacting to family members:

“Weren’t Deirdre and Conrad still in charge? Probably, I said. But the alternative was seeking guardianship through the court system, and that could take six months or more. If we went down to Aiker Place with Dad, he could ask to see the paperwork, and maybe there would be another way. We both believed that Dad would have the moral authority as Teresa’s father and her primary caregiver. Maybe that would be enough.”

From issues of control to others about empowerment and battles… Franke lays out a candid, clear course of struggle. This will engage a wide range of readers, from those coming from legal circles to families facing their own internal and external truths.”

Read the full review
Buy the book at Amazon