FACT Oregon: Empowering Families Experiencing Disability to Pursue Whole Lives

A story from Health & Education Fund Impact Partner FACT Oregon.

“When we received Lizzie’s diagnosis of Down syndrome just after her birth, I had no context for what it meant for her or us. I feared she might not walk, talk, or count to three. I did not know if she would make friends, play sports, or do homework. As her parent, my preconceived thinking about disability — my ignorance — could be the biggest limiting factor to her living a full, whole life. What do you DO with that?”

— Elliott Dale

From diagnosis, disability is often presented as a deficit and a reason to segregate. This leads to lives of limited growth, social isolation, loneliness, poor health outcomes, and underemployment for too many Oregonians. FACT Oregon empowers families experiencing disability to pursue whole lives and change the trajectory for their kids to one of unlimited potential.

Parents are hungry for support, resources, and ways to engage in community. FACT Oregon provides trainings, peer-to-peer support, and community building programs for families of youth experiencing disability to help change life trajectories. We support families across all 36 Oregon counties and are parent-led. Our board maintains a majority membership of parents, and all leadership and program staff are parents of youth or young adults experiencing disability. Our person-centered, collaborative support services and trainings cover special education, assistive technology, behavior as communication, inclusive recreation, disability awareness, becoming a welcoming community, family networking, navigating disability service systems, person-centered planning, transition to adulthood, and more.

We are experiencing record-breaking call volume, with a 32% growth in calls from families seeking support over the last year. One question we often ask families when they call or attend a training is: "What is your vision for your child's future?" That one question reminds families that they have the power to change trajectory, to hold high expectations, and to give their kids the opportunities they need to live whole lives of self-determination and inclusion.

One of our newest programs, the All Ability Tri4Youth, helps improve the health and well-being of young people experiencing disability by encouraging physical activity in community. A major factor in the high obesity rate for people with disabilities is limited access to sports and recreation. FACT Oregon's All Ability Tri4Youth, the only barrier-free triathlon on the West Coast, actively demonstrates how to design programming that welcomes people with disabilities more fully into sports and recreation. Participants get a chance to explore swimming, biking, and running, and families connect with local sports and recreation resources that their youth with disabilities can access.

Elliott’s story didn’t end in fear and ignorance. He got involved in FACT Oregon, currently chairs our board, and is on a journey, living a whole life:

“Our family was fortunate to connect early with people who helped us challenge our norms. People who held high expectations, showed us that disability is natural, and modeled how to navigate the next step for Lizzie and the step after that. These are the people and families of FACT Oregon. Today, Lizzie counts, she runs, she has play dates, she has ballet practice and plays soccer, she does homework. And she is in first grade in a typical class in our neighborhood school— the first child with Down syndrome to attend for as long as anyone can remember. The people at FACT Oregon helped us make that happen.”

Find out more about FACT Oregon at www.factoregon.org, and register today for our All Ability Tri4Youth, which will take place August 10, 2019 at Tualatin Hills Athletic Center in Beaverton.

Q&A with Author and Social Justice Activist Grace Eagle Reed

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Grace is one of the leaders who participated in the Collaborative.

Q. What communities do you consider yourself a part of?

A. I am part of several communities that address the issues raised by Black Lives Matter, gun violence, racism, alcoholism/addiction support, nonviolent communication, homeless/houseless street outreach, etc. I’m also on Multnomah County’s Disability Services Advisory Council.

Q. What leadership roles have you played?

A. I was part of the MLK Jr. marches in the U.S. South, Vietnam War protests, support for the Black Panthers, Native American Métis movement (bringing equality to mixed-blood Natives), the women's rights movement (yes, we did burn our bras) and Woodstock (peace through music and legalizing that MaryJane). I was able to enjoy Jimmy Hendricks, the Beatles, Janis Joplin and Bob Marley in LA, and I’ve been a social justice activist since then.

Last year I was awarded Senior Leader of the Year by the City of Portland. I step up for leadership roles in various places in my life, mostly as a supporter for leaders who are more front and center in creative art/poetry, religion, political and peace movement efforts. I prefer to be a cheerleader to those that are already doing good work daily in the social justice arena.

Q. What leadership roles do you hope to play in the future?

A. I am 75 with 40 years of sobriety and a published author/poet/dramatist with a B.A. in drama therapy and a M.A. in restorative justice/conflict resolution. I hope to do more work with organizations with my 'Friendship Table' project. I am also working on another book.

Q. What did you get out of participating in the Disability Justice Leaders Collaborative? 

I enjoyed being a part of the Disability Justice Leaders Collaborative and the people involved. There is much work to be done, and I admire people who step up with passion to bring justice and peace to the chaos and who look for more solutions. 

Q. What did you contribute that you hope others learned from?

A. Justice is needed in most areas of life, especially with marginalized and oppressed peoples. Restoration and balance in the broken systems of this world takes many people with much courage and vision, and I am grateful to be part of this movement. I addressed this in my book Negotiating Shadows and continue to work toward world peace. Our local region is doing much with housing issues, the Black Lives Matter movement, etc., and I am glad I am part of making life more wonderful for my city and community.

Willamette Workforce Partnership Improves Job Seekers' Mental Health

Economic opportunity and stability are key to good health. When families can afford quality housing, food, healthcare, childcare and other necessities, individuals and communities do better.

In 2012, our communities weren’t doing well. Families struggled to make ends meet, and nearly one out of 10 Oregonians was unemployed. Due to the Great Recession, many of these folks were unemployed long term, leading to depression and other mental health issues.

At the peak of unemployment in the United States and our region, researchers at the mid-Willamette Valley Worksource Center (then called Job Growers, now the Willamette Workforce Partnership) discovered that programs in Britain and Australia were successfully using cognitive-behavioral therapy to improve the mental health of the long-term unemployed and, thus, help them find jobs. Inspired by reading about these programs, Willamette Workforce Partnership created a series of workshops based on cognitive behavioral principles. Kaiser Permanente Community Fund funded a small pilot. Results were positive, and the federal Department of Labor then funded a state-wide five-year project.

To date, more than 1,200 unemployed people have gone through the workshop series in WorkSource Centers around the state. The workshop runs for four weeks, with three two-hour session per week. Topics covered include: how thoughts and feelings affect behavior, risky thinking and how to counter it, increasing emotional awareness, managing negative emotions, building self-esteem, goal setting and maintaining momentum during a job search.

Willamette Workforce Partnership plans next to pilot test the workshop series with groups that historically face more barriers to employment. That includes job seekers with various disabilities, young adults with Autism, social service recipients, workers’ compensation participants, and folks being released from incarceration.

Beginning this September, Public Policy Associates will formally evaluate the five-year project. Preliminary results will be available in December.

Q&A with Pessoptimist Mohammed Usrof

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Mohammed is one of the leaders who participated in the Collaborative.

What communities do you consider yourself a part of?

Muslim community, Arab community, Arab American community, the Palestine solidarity community. And people with disabilities.

What leadership roles have you played?

I’m not sure how to define leadership, but I was part of the Unite Oregon Pan-Immigrant Leadership Program. Through them I was able to participate in introducing bills and supporting bills to end profiling and supporting the housing for Section 8 and expanding it. Also, I was an activist on-campus when I was at PSU in regards of the Palestinian question and how to introduce people to what’s going on in Palestine in regards of occupation. And also further exploring the intersectionality between the Palestinian question and other issues that are facing our communities here in Oregon. How to tie both issues together in regards of advancing to find the best way to handle it.

What leadership roles do you hope to take on in the future?

I haven’t taken any leadership role in regards of disability specifically, so I would like to further advance my skills and my spectrum to go to that. You know, like currently, I’m facing some stuff relating to work and technology and how to introduce the workplace to the right technology. And that accessibility culture it’s not just like accessibility because we like to be progressive, but to be part of the culture itself. So that’s something I’m interested in. And also, in regards of what leadership stuff I did, is at work also we’re currently working on exploring what’s the best way to target the holidays. In regards of like marginalized people like holidays, like the Muslim holidays, Jewish holidays, the Hindu holidays and like how, for example, the county is recognizing only the mainstream Christian holidays and MLK and Presidents Day, but when it comes to the Eid Al-Fitr or Eid Al-Adha for Muslims you have to educate your supervisor about the holiday in order to be able to ask the day off. So we’re working on that and trying to find what’s going on, so we’re mobilizing, organizing, having meetings. So that’s one of the things that we’re doing, but in regards of advancing, I’d like to basically introduce myself more to disability and people of color in general.

Where do you work?

Multnomah County.

What’s most exciting to you about disability justice?

I’m excited that we’re exploring it in a group of non-white people, because there is this big thing about like, well, disability justice concept is being exploited, or like I mean being explored only, by white people. And when I see a group of us in the room talking about it and exploring it as people of color. I started reading the handout that we got that is actually like a Black vision, a Black lens of disability justice that actually makes me feel happy.

What do you hope to get out of being part of the Collaborative?

Well if I want to be realistic, I hope to be a friend of at least all of them. All of the people who are there. On a wider lens I hope to, you know, be connected to the work of disability justice just like after the Collaborative because, yes we did four days a year, but what’s after? How can we translate the concepts that we’re tackling into something visible on the ground?

What’s your vision for the future of our region?

I can’t see very well, but… [laughs] 

In regards of disability and accessibility, I’m skeptical in regards of if we’re going to the best. But I think I would like accessibility to become part of our culture, not something strange or something special. Or something like when you go to an employer or go to a FedEx store, not having to have help to use the printer. Like the printer to be all accessible printer for example. So I would like the vision to be something like that.

My vision for the future in a more realistic way, a disability group that focuses on and is led by people of color.

What is your favorite book, movie or song, and why?

My favorite book is The Pessoptimist by Emile Habibi, and… It’s, you know, he’s a Palestinian and writer, and he’s exploring the regular person notion in regards of the question of Palestine from a person who’s on the ground, who’s basically, it was written when Oslo was like people starting talking about it, and the idea of two-state solution coming up. And somebody on the ground basically happy that there might be some good stuff coming out of it, but at the same time very disappointed at it wasn’t yet justice that we deserve as Palestinians or he deserve as Palestinian. That notion of not optimistic, but optimistic. I feel like it’s an ongoing book. Yes, maybe it’s written about the Palestinian question, but, you know, switch the Palestinian question and put Trump. Or like put accessibility, or put something. You find yourself as a person who’s living in this contemporary age basically cannot be optimistic and cannot be not optimistic. Or pessimistic. So it’s like in-between.

And songs, there’s so many. I like Fairuz. Fairuz is like one of the most famous singers in the Arab world. She’s almost eighty-three, and she’s singing. She just released an album this year, and she’s wonderful. The best time to listen to her is in the morning.

And movie. I’ve never answered that question before. The Lion King.

Anything else you want people to know?

I would just like to see us advancing, and what’s the role of Northwest Health Foundation after the Collaborative? One of the things is like the room that we’re meeting in. It’s one of the best rooms in regards of accommodating people with disability that I’ve ever been in. If there’s a way to make this room accessible for the community of people with disability, how is that would look like? In regards of like the access to the online, like how it’s very helpful in accommodating all types of wheelchairs. And how the tables are configured. So I think, yeah, that’s a question I have. And I think it would be very, very helpful. I remember in one of our email threads – I don’t think if any of the Northwest staff was on it – we were trying to do a meeting outside of the Collaborative, and the different type of accessibilities ended up being a barrier. So, I think that’s a need, and I think it would be nice if you can explore what to do as an organization. 

Q&A with Environmental Justice & Immigrant Justice Leader Joel Iboa

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Joel is one of the leaders participating in the Collaborative.

Q. What communities do you consider yourself a part of?

A. I consider myself a first-generation Oregonian, a child of immigrants, Latino, Indigenous and disabled.

Q. What leadership roles have you played?

A. A bunch. In high school, I was captain of my water polo and swim teams. College, I had leadership positions in MEChA and the Coalition Against Environmental Racism. After college, the governor, Kate Brown, invited me to join the Governor’s Environmental Justice Task Force. I’m the chair of that now. Two years ago, I was chosen to be on the City of Eugene’s Human Rights Commission. I’m now the vice chair, and I was just elected to be the incoming chair next year. I’m also the oldest of three siblings. That was my first leadership role. My mom was the oldest of 14. And I’m the oldest cousin of about 30.

Q. What leadership roles do you hope to take on in the future?

A. Like I said, I’m going to be the chair of the Human Rights Commission in Eugene and the Governor’s Task Force. I want all my leadership roles to have a positive impact on the most vulnerable: disabled people, communities of color, elders, children. I want my leadership roles to get increasingly larger and more impactful as I get older, because leadership positions are where you can have the most, largest impact on a lot of people.

Q. What is most exciting to you about disability justice?

A. The people who participate in disability justice are some of the most vulnerable. One of the earliest things I worked on was the achievement gap between white students and students of color. I learned that when black boys do better, all students get better. When the most vulnerable are supported, everyone benefits.

Disability justice also affirms that all our bodies are unique, and all our bodies are essential. It welcomes people who haven’t been able to participate. It affirms that disabled bodies aren’t a detriment to the world. They’re an asset. The liberation of people with disabilities is crucial. The ADA and disability rights are also crucial, but DJ builds on that by transforming society to see people with disabilities as having inherent worth.

The movements I’ve been involved with – immigrant justice, anti-prison, environmental justice – some of the people most affected are people with disabilities, especially queer and trans people of color with disabilities. I see this as the last frontier in terms of my personal development.

Q. What do you hope to get out of being a part of the Disability Justice Leaders Collaborative?

A. I’m hoping we can begin to make some noise around disability justice. We’re already starting. The people in the group are movers and shakers.

I want to see disability justice raised in the same way gender has been raised recently. We’ve realized men aren’t the only folks who can lead. Queer and trans folks need to be welcomed and centered. We’re dealing with double standards around sexual harassment. I’m hoping we can do the same thing with disability. For instance, access check-ins should be normalized. Aspects of disability justice are useful for everyone, especially people doing this strenuous, stressful, emotionally difficult work.

I also want to see us develop political power at a local and statewide level. 

Q. What is your vision for the future of our region?

A. I know it sounds cheesy, but life, liberty and the pursuit of happiness. A lot of people don’t have these things. For many of us, life itself is difficult. I want to live in a time and place where everyone who lives here can pursue life, liberty and the pursuit of happiness.

Q. What is your favorite book, movie or song, and why?

A. The Lord of the Rings trilogy. I love those movies. When I was really sick in middle school, and I spent three months in a hospital up in Portland – which is part of the reason I became disabled – one of the things that got me through was Lord of the Rings. It still helps me feel better, when I’m sick or having a bad day. All things Tolkien, actually. *laughs* That’s my vision for the future of our region. Hobbiton.

Q&A with Disability Justice Visionary Myrlaviani Perez-Rivier

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Myrlaviani is one of the leaders participating in the Collaborative.

What is your vision for the future of our region?

I envision Disabled People of Color winning political positions, influencing decisions, and deepening our overall capacity as a community.

What is most exciting to you about Disability Justice?

Disability Justice demands, by way of compassion and caring communities, systems change, institutional reform, and a new notion of private and public market performance defined, owned, operated, and valued by community members most impacted. Disability Justice is all about creativity and innovation. It’s invigorating and demanding. It means you have to show up and demonstrate radical self-love and compassion, which are founded on standards of quality caring and intimate connection. We account for the complex strata of universal access, intersectionality of race, disability, gender, and religion with the never-ending and always-loved question of “What am I missing here, right now? Do we have what we need?” We are the road builders and bridge architects we need. I feel we are ready for Us.

What do you hope to get out of being a part of the Disability Justice Leaders Collaborative?

My goals include organizing a group of leaders holding conversations within and across urban-rural communities to discover and cultivate participants committed to policy and program change and implementation. Addressing current power dynamics will enhance collaboration across systems by way of generating ideas and building alternative solutions. Our community has the solutions and, through strategic partnerships, we can help lead and build the results we need.

For instance, this looks like rural and urban Oregon building relational bridges and, through a willingness to learn, adapt, and innovate, realizing opportunities for one another while addressing public problems. One which comes to mind is food deserts. We need effective policies whereby our Disabled community can readily access high-quality, nutritious food. There are solutions, but we need courage and support. At the same time, nothing happens without supportive housing, and who says passive-designed homes cannot also be designed within the universal design criteria? High-quality housing designed around collective access means building a new type of community—a community where people actively support one another. This is the vision I have of our reNew Oregon™—one where we support one another and build a meaningful future together. When enough of us make this decision, then we will see employment rates rising, especially for Disabled “People of Color.”

What leadership roles do you hope to take on in the future?

I am committed to becoming a better transformational leader: identifying, cultivating, and promoting leadership and leadership development in Disability communities. I am keen on improving the employment rates of individuals with disabilities and recognize this will require not only policy change but also changes in awareness and attitudes on the part of families, businesses, and civic leaders.

What communities do you consider yourself a part of?

Disability foremost, and all else follows. I come from a multicultural background. I grew up dancing flamenco, listening to Tejano music, being friends with Latins from Central America to South America to Spain, marching with Chicano Agricultural Workers (Cesar Chavez), listening to my Mother’s stories of her ancestors and, on my Father’s side, learning about poverty and oppression, or how the Mexican-American wars impacted the trajectory of his family’s development. The cultural extremes from both families provided a rich and textured playground of possibilities from which my curiosity and drive still develop.

What leadership roles have you played?

I have participated in local advisory boards or commissions, as well as community engagement work across Disability lines, especially with “People of Color.” I also started a community restorative listening circle. I have been particularly enthusiastic in volunteering for positions that work towards criminal justice reform, racial justice, and disability justice, across government and community-based organizations.

What is your favorite book, movie or song, and why?

The book I’m enjoying the most right now compels me to wonder and enjoy breathing, reading, imagining impossibilities and living, again. It is Dirty River: A Queer Femme of Color Dreaming Her Way Home by Leah Lakshmi Piepzna-Samarasinha. Artists lead the way for social change and Leah Lakshmi Piepzna-Samarasinha is wonderfully and refreshingly uncompromising.

Is there anything else you want people to know?

When you love something or someone, including yourself, you make a stand, define your standards, live with integrity and a willingness to self-assess. With that in mind, I’m curious about what is important to my fellow Disabled community members. I want to know what satisfies and, equally, what leaves them with discontent within our current system. Further, what improvements are they willing to invest their talents, energy, and time in to create and operate? If you are interested in developing dialogue around these and other questions, please contact me through NWHF.

Q&A with Palestinian Rights Advocate and Basketball enthusiast Waddah Sofan

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Waddah is one of the leaders participating in the Collaborative.

Q. What communities do you consider yourself a part of?

A. I am part of Palestinian/American, Muslim, Middle Eastern, people of color and disabled communities. I am a very diverse individual who is lucky to belong to all of the above communities.

Q. What leadership roles have you played?

A. I was highly involved as a student government leader at Portland State University and community leader, community organizer and disabled rights advocate. I've also been involved with the following agencies:

• Advisory chair for Multicultural Student Center, Portland State University

• Student government leader, Portland State University

• Head of disability advocacy cultural association student group, Portland State University

• Outreach coordinator for Arab Persian Student Organization

• Board member for Center for Intercultural Organizing (now known as Unite Oregon)

• Wheelchair youth basketball coach for Oregon Disability Sports

• Co-founder of Palestinian Federation for Disabled for Sport

• Member of national wheelchair basketball team

• Co-founder of Students United for Palestinian Equal Rights, Portland State University

• Member of Disability Power PDX, City of Portland

Q. What leadership roles do you hope to take on in the future?

A. I would like to improve my leadership skills to be able to serve the disabled community at large, to help create and change polices at the local and state level that impact disabled peoples' daily life. Also, I would like to share my experience and train disabled youth to become independent and take command of their lives.

Q. What is most exciting to you about disability justice?

A. Advocating for disabled individuals around the globe is something that excites me about disability justice. Also, what excites me is that we, the oppressed people, are uniting and moving together as one to bring justice and equity to those who seek it.

Q. What do you hope to get out of being a part of the Disability Justice Leaders Collaborative?

A. I would like to be more familiar with policies and regulations that concern disability accessibility in our community, so I would be able to communicate them clearly to improve outcomes for people with disabilities.

Q. What is your vision for the future of our region?

A. In my simple opinion, I would like to see the disability rights and disability justice movements continue to grow and more people claim their own uniqueness or identity as people with disabilities or as an oppressed people. I would like for everyone to live in peace and harmony, and for our community to be very welcoming and understanding of those they don’t have common interested with.

Q. What is your favorite book, movie or song, and why?

A. My favorite movie is The Green Mile. It is a great story about forgiveness, kindness and love. The story was very uplifting and draws you into it most of the time. It was about an innocent man who has very soft heart on death row for a crime he did not commit. The man has nothing but hope and love for all people he came in touch with. He healed peoples' hurts on his own expense when either used his miracle of healing. He even healed those who were selfish and put him to death. It is a story of giving and making good in life despite knowing you won’t live long enough to see the goodness that impacted others.

Q&A with Healthcare and Housing Advocate Nico Serra

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Nico is one of the leaders participating in the Collaborative.

Q. What communities do you consider yourself a part of?

A. The transgender community and the queer community. The disability justice community. The Black community. The healthcare advocacy community.

Q. What leadership roles have you played?

A. I’ve had the opportunity to do a lot of speaking at events and rallies, and to give testimony at hearings. I’m on the Board of Directors at Real Choice Initiative and Health Care for All Oregon, and I organize with several other groups focused on justice for vulnerable people.

I spend a lot of time advocating for myself and other folks with serious health concerns. Many have shared resources with me, and I enjoy passing that knowledge on to others. I’m mostly focused on housing and healthcare. I strongly believe that housing is healthcare, because no matter how good someone’s healthcare is or how good their nutrition is, if they don’t have housing it doesn’t matter.

The waitlist for accessible housing in the City of Portland is fifteen, eighteen years long. Folks are forced into nursing and group homes, where they control almost nothing about their lives. Recently, I heard a friend talking about how hard it is to be twenty years old and living in hospice care. They were trying to study for exams, but instead wound up hanging out with someone who was about to pass because that person’s family didn’t show up. People forced into these situations describe what sounds like imprisonment. They don’t get any privacy. They can’t choose what they want to eat or when to eat. They can’t come and go as they please. They don’t even get to choose when to bath or go to the bathroom. This and ending up on the street is everyone’s worst nightmare, and it's brought to you by your tax dollars. I’m doing my part and encouraging others to join in changing this problem.

Q. What leadership roles do you hope to take on in the future?

A. I want to organize with other People with Disabilities and serious health concerns, transgender people and people of color to find or create sustainable, accessible and affordable housing and healthcare.

I also want to focus on employment for the mentioned populations. Due to capitalism, eugenics and imperialism, I think people with health issues, transgender and non-binary people, and people of color have a harder time getting and keeping jobs. I want to organize folks struggling to find work to become personal care assistants. Then we’ll have someone who doesn’t just tolerate or respect our culture, but who are actual members of the same cultures and communities.

Q. What is most exciting to you about disability justice?

A. What’s most exciting to me is that it affects everybody. I agree with something a friend and fellow organizer said: “I’m less interested in breaking through the next glass ceiling and more interested in raising the floor.” With disability justice, everybody does better.

Q. What do you hope to get out of being a part of the Disability Justice Leaders Collaborative?

A. I hope to have a more thorough understanding of where the disability justice movement came from and how I can continue the work. I’ve become disabled in my adult life, so I don’t have as deep of an understanding of it compared to folks that have had altered abilities since birth or childhood.

I’m excited about meeting more brown and Black people organizing around Disability Justice. These are all seriously resilient people who know how to survive almost impossible circumstances. These are people who get it and want to change the way things are, not just for us, but for elders and the people coming after us as well.

Q. What is your vision for the future of our region?

A. The system must undergo revolutionary reformation, because it’s not just a broken system, it’s a system that was built on the broken backs of brown and Black people and that continues to this day. 100 million indigenous people were killed when this land was colonized and 52 million people were killed in the TransAtlantic slave trade. Is it really any wonder why some people’s lives are more difficult than others? Being actively hunted in the streets and/or being thrown into institutions absolutely changes whether or not a person can reach self-actualization. I think We The People must throw capitalism out. In 2017, 82% of the wealth in the USA was in the hands of the top 1%. That means that the other 99% of us are expected to step on the throats of our loved ones and neighbors and fight over the leftover scraps. I, for one, am done with this dynamic, and I think many others are too.

I think unlearning the dangerous practice of consuming one thing or another to deal with big feelings is the place to start. Learning how to be in the center of our centers, in the eye of the storm, will help all of us emerge from our "trauma tunnels." From there, everyone learning how to think critically is a part of my vision. I think the Pacific Northwest and the West Coast are places where all this could actually change. I think there are enough people here who care and are actually doing real things to create these changes.

The way the Social Security Administration defines disability is all about functionality. If someone has an inability to hold down housing, that makes them functionally disabled, in my opinion. The folks stranded out on the street are on the front lines of a brutal class war, and We The People cannot wait for the State to solve this. We must create ways to meet our needs and the needs of those around us. If there is any place on this land where this could happen, it's Portland, the Pacific Northwest and the West Coast.

I envision everyone receiving holistic healthcare and being housed. Unfortunately, institutionalized oppression is real, and this crushes our bodies, minds and spirits. If we get locked out of healthcare and/or housing, it’s almost impossible to develop sustainable connections with those around you, get a job, and so many other things. When someone shows up and is deemed to have red flags – you’re a person of color, you don’t have insurance, you don’t have a place to live, you have depression, chronic pain, you’re trans, queer, you’ve been on opiates, you experience post-traumatic stress, etc. – unless you have a really good support network, advocates, and, in my case, help from my Congressional Representative, you get blown off and end up dead, on the streets or in prison. When I first sought treatment after being hit and dragged around a corner by a station wagon while riding my bicycle, I was blown off, yelled at, humiliated, among many other horrors. For example, it took three years to get a cast on my broken hand. So, it’s really important to me to pass Health Care for ALL Oregon and on the West Coast, while at the same time changing the way people think about healthcare. Many folks are taught to run to the doctor’s office for every piece of advice about how to take care of our bodies, but there’s so much people can do themselves just by changing what we put in our bodies and other daily habits.

Q. What is your favorite song, book or movie?

A. I’m really into this Beyonce song called “Freedom:” “Freedom! Freedom! I can’t move, freedom, cut me loose! Freedom! Freedom! Where are you? Cause I need freedom too! I break chains all by myself, won’t let my freedom rot in hell. Hey! Ima gonna keep running cause a winner don’t quit on themselves.”

Q. Is there anything else you want people to know?

A. Please join me in this work at RealChoiceOregon.com and HCAO.org (Health Care for ALL Oregon). Let go of the next glass ceiling, raise the floor and build from the ground up.

Q&A with Somali Refugee and Community Organizer Saara Hirsi

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Saara is one of the leaders participating in the Collaborative.

Q. What communities do you consider yourself a part of?

A. I’m from a lot of communities. I’m originally from Somalia, which is located in East Africa. I consider myself part of the immigrant/refugee community. I’m also part of the advocacy and social justice communities and the disability community.

Q. What leadership roles have you played?

A. I’m an activist and community organizer. I created a program called Health Care and People with Disabilities within the African Youth and Community Organization (AYCO). This program empowers individuals with disabilities to get education and employment when they are ready. This program gives resources and information to family, adults and parents who have children with disabilities. We have English for Speakers of Other Languages (ESOL) classes, Personal Support Worker training and community education about disabilities. I introduced the AYCO organization to what people with disabilities can do and how they can get resources in this country. Refugees with disabilities are often socially isolated their home. This project is about educating the community to change beliefs and attitudes about disabilities.

I’m also part of REAL: Reject Economic Ablest Limits. REAL is about understanding leadership, systems change, and learning and working on employment. We advocated for two positions with the City of Portland. We've also done leadership trainings, and we used the ten principles of disability justice.

Q. What leadership roles do you hope to take on in the future?

A. I want to be a part of policymaking. I am interested in participating in advocacy and policy change, because our voice is not there. When we put more people who experience the problem in decision-making positions, we’ll get more solutions to fix the problem.

Q. What is most exciting to you about disability justice?

A. I really appreciate this opportunity, because I was fighting for this on my own. Disability justice gives me the opportunity to learn social justice language, build confidence and give me hope to make change. Before disability justice training, I thought no one understood my challenges. I learned that there are activists who are working to change these problems. I appreciate seeing other people working on these issues. I look forward to becoming a better leader and learning more, so I can help more people to become leaders in the future.

Q. What is your vision for the future of our region?

A. I would like to see the people affected by problems in leadership role: young people with disabilities, immigrants, refugees and people of color. When these people become leaders everyone will benefit. We will all walk together and achieve our goals.

Q. What is your favorite song, book or movie?

A. Actually, I love poetry, because I love the idea behind it. I come from a poetry culture.

Q. Is there anything else you want people to know?

A. I am a good listener and love to learn. I love meeting new people and learning something different. And I’m open-minded to learn about other people. I would like to travel if I could.

Q&A with PSU Student and Advocate Arlene Amaya

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Arlene is one of the leaders participating in the Collaborative.

Q. What leadership roles have you played?

A. Currently, I'm the cultural sustainability coordinator for Portland State University’s Student Sustainability Center and the community engagement coordinator for Green Lents. I also hold leadership positions through PSU’s accessibility committee, universal design subcommittee and environmental club.

Q. What leadership roles do you hope to take on in the future?

A. I’m not entirely sure what my future leadership roles will look like, but I'll be graduating from Portland State in Spring 2018, so they'll likely be significantly different.  Right now I'm more focused on the process of shaping what principles I want to apply to my current and future work. 

Q. What is most exciting to you about disability justice?

A. I think it’s another opportunity to recognize the inherent value and dignity of everyone, which conflicts with the ways many of our systems and institutions currently operate. It’s also a chance to recognize the strength in our differences. Validating one another’s accessibility needs is crucial, and it requires that we are part of a community that holds itself accountable to a dynamic learning process. In these ways, disability justice feels like truly exciting and revolutionary work to me.

Q. What do you hope to get out of being a part of the Disability Justice Leaders Collaborative?

A. I decided to apply for the DJLC, because I wanted to gain a better understanding of ableism, my own accessibility needs and how to apply these principles to my work. I wanted to do so as part of a community, and then work within that community to build collective power. 

Additionally, my identity as someone who's disabled doesn't exist separately from my identities as a queer, working-class Latina (from Salvadoran parents). In many spaces that focus on disability rights, we're not able to explore the significance and influence of our other identities and that comes at a huge cost. The DJLC is a unique and special space, because it really mobilizes those important conversations. Its leading principles should be part of all justice movements. 

Q. What is your favorite book, movie or song, and why?

A. I have many favorites in each category, but the last book I read was Corazón by Yesika Salgado, the last movie I watched was Black Panther, and the last song I listened to was "Sound & Color" by Alabama Shakes. 

Q&A with Veteran and Community Health Worker Tamyca Branam Phillips

In 2017 and 2018, Northwest Health Foundation convened the Disability Justice Leaders Collaborative – a group of fourteen disabled people of color interested in deepening their understanding of disability justice and discussing visions and strategies for ensuring the needs of people with disabilities are centered in decision-making. Tamyca is one of the leaders participating in the Collaborative.

Tamyca Branam Phillips

Q. What communities do you consider yourself a part of?

A. African American, Native American, veterans, military, grandparents, community activists, community health workers, community education workers.

Q. What leadership roles have you played?

A. Currently head of the Urban League of Portland's morale committee, as well as facilitator for parent empowerment workshops in the Urban League's community health worker program.

Q. What leadership roles do you hope to take on in the future?

A. I would love to work up the chain to management and executive management positions within the Urban League. I also want to be highly active in roles of systemic change within broken systems hurting our communities.

Q. What is most exciting to you about disability justice?

A. Being a part of a team that is addressing the inequities placed upon individuals with disabilities. Being part of the solution in fixing the systemic oppression and discrimination.

Q. What do you hope to get out of being a part of the Disability Justice Leaders Collaborative?

Additional resources, networking, ideas and language to help educate and empower the many communities that I am a part of.  Knowledge is power, so I will take the knowledge learned and share it.

Q. What is your vision for the future of our region?

I don’t know. The running joke amongst family, friends and my community is, when am I going to run for any number of offices… commissioner, mayor, senator, congresswoman, president. I want to finish my B.S. in public health with a minor in civic engagement. Then, of course, move forward up the education ladder.

Q. What is your favorite book, movie and/or song, and why?

A. Book: don’t have one, but I do enjoy Where The Side Walk Ends. Movies: Legend, Labyrinth, Dark Crystal, Matilda and any Tim Burton movie. Song: Christina Aguilera's "Fighter" (inspired my fighter tattoo on my right shoulder). It represents that, no matter what, I will get back up. You can never hold this girl down.

Q. Is there anything else you want people to know? 

A. I am veteran of two military services: Navy and Coast Guard. I'm a former EMT Basic and firefighter. I have multiple invisible disabilities. I don’t show them, because I am determined not to let them hold me down.

I was born to serve my community. From 16-years-old to the present, you can find me serving my community in a variety of ways. So much so that a coworker published a story about me giving my all without thinking. You can read the story here.

Learn more about the Disability Justice Leaders Collaborative here.

Oregon Renters Lead the Way to Safe, Stable and Healthy Homes

Change should always be led by the people who will be most impacted by it. Solutions work better for everyone when they are created by the communities that need them the most. It’s the curb-cut effect.

For example, everyone in our region — Oregon and Southwest Washington — has been affected by the affordable housing crisis. Even homeowners feel the impact when neighbors, coworkers and employees, their children’s classmates, teachers, caregivers and countless other community members suffer the stress of housing instability. Housing instability impacts all of us. But who is most impacted? Who should lead the way in confronting this problem?

According to Community Alliance of Tenants (CAT), low-income tenants — mainly, people of color, families with children, low-wage workers, people with disabilities and seniors. Which is why CAT is partnering with a number of organizations to advance tenant protections this legislative session.

Across our region, increased demand for housing has led to rent hikes and no-cause evictions. Too many families find themselves houseless, priced out of their cities and towns, sleeping on friends’ couches, in cars and shelters, even on the street. Without a safe place to call home, they struggle to keep their jobs, feed their kids and get them to school.

Families who haven’t been evicted are too scared to ask their landlords for necessary repairs and improvements; they’re afraid of retaliation. Meanwhile, their children suffer from “slum housing disease” due to unhealthy living conditions.

Their fear is warranted. Families with small children, especially from immigrant and refugee communities face higher barriers to quality housing, and they’re more vulnerable to discrimination, retaliation and involuntary displacement.

CAT members, as well as their majority-tenant board of directors, identified no-cause evictions and lifting the ban on rent-stabilization as their top priorities. So CAT responded by convening the Stable Homes for Oregon Families Coalition, a group of over 75 organizations advocating for the 40% of Oregonians who rent their homes. CAT also initiated the Tenant Leadership Council, composed of parents of color to lead the #JustCauseBecause campaign this legislative session.

The Tenant Leadership Council spent time helping shape House Bill 2004, vetting it against their experiences, and mobilizing their fellow tenants to participate in various actions, including phone banking, visiting their legislators, hosting rallies and supporting civic engagement opportunities for renters. They also coordinated lobby days at the Oregon State Capitol and developed and presented testimony in support of the bill. On February 4, they packed a listening session with 250 people, and 20 legislators and their staff attended to hear residents from all over Oregon share their stories. On April 30, they plan to pack another listening session in Eugene. 

Thanks to the leadership of low-income Oregon tenants, we trust #JustCauseBecause and #RentStabilization are the best choices for our state. We may not end the affordable housing crisis with these two bills, but we will reduce stress and fear, mitigate displacement and ensure renters feel supported enough to demand healthy living conditions. And everyone in our region will benefit because of it.

Community Alliance of Tenants is one of Northwest Health Foundation's Kaiser Permanente Community Fund funded partners.

A New Narrative for Racial Equity in Oregon

A story with Healthy Beginnings+Healthy Communities Collaborative Racial Equity Agenda.

Words are powerful. If you know how to be persuasive with language, you can get a lot done. However, your words can also work against you. If you don’t do the necessary preparation, your message could communicate something you never intended.

Racial Equity Agenda, a Healthy Beginnings+Healthy Communities Collaborative, is busy doing that necessary preparation, creating an effective racial equity narrative for Oregon that will help community organizations begin important conversations about race with voters and policymakers, and move Oregon closer to racial equity.

Amanda Manjarrez presenting at the Healthy Beginnings+Healthy Communities gathering of Community Collaboratives in Salem, Oregon.

On February 7th, 2017, Amanda Manjarrez, Coalition of Communities of Color’s Advocacy Director, stood at the front of a small, windowless conference room in the Salem Convention Center and introduced the idea of a cohesive racial equity narrative to community members and organizers from across the state. She presented examples of how effective narratives and values-based language can be at triggering emotions. For instance, words like “illegal,” “violent criminal” and “radical” have been selected purposefully by politicians to invoke fear about specific races and religions. These words, part of carefully constructed narratives about undocumented immigrants, black men and Muslims, have been used, successfully, to advance policies and candidates. If community organizations in Oregon want to push back against these narratives and have positive conversations about race, we need to construct our own narrative that will spark other emotions that lead to more inclusive communities and shared prosperity.

Unfortunately, people aren’t as logical as they like to think they are. In reality, humans make quick, emotional judgments, then use reasoning to justify those judgments. People also hold contradictory, competing ideas in their heads at the same time. It falls to communicators to choose the right story that will produce the desired emotions and lead an audience to take a specific action, whether that’s voting a certain way, donating to cause or something else.

“It’s not what you say, it’s what people hear.”

— Frank Luntz

Amanda invited EUVALCREE Executive Director Gustavo Morales and Southern Oregon Education Service District’s Migrant Education Program Parent Involvement Specialist Monserrat Alegria to share their experiences having conversations about race. Both Gustavo and Monse live in rural Oregon communities (Ontario and Medford, respectively). They’ve been part of meetings where participants will get up and leave if “race” or “equity” are mentioned. They’ve seen their community members homes vandalized, families afraid to go home. According to Gustavo and Monse, the best way to start a conversation about racial equity where they live isn’t by talking about racial equity; it’s by opening with shared values like opportunity, children and families, and community building. These are narratives that almost everyone can connect with.

Racial Equity Agenda’s goal is to find a narrative that will work for all Oregonians, a way to talk about racial equity that won’t cause people to shut down or leave the room, and will result in decision-making tables including more people of color. In order to accomplish this goal, Coalition of Communities of Color is partnering with several culturally-specific and mainstream organizations, including Native American Youth and Family Center, Latino Network, Unite Oregon, Urban League of Portland, KairosPDX, Causa Oregon, Asian Pacific American Network of Oregon, Hacienda CDC, Immigrant and Refugee Community Organization and Self Enhancement, Inc. By coordinating to use a unifying narrative for their work, their impact will be great.

Disability Art and Culture Project Presents Portland ReelAbilities

What is problematic about representations of disability in film? A lot. More than we have time or space to discuss here. People with disabilities are hugely underrepresented both in front of the camera, as actors, and behind the camera, as filmmakers. Too often actors without disabilities play characters with disabilities, and characters with disabilities fill flat, stereotypical roles. These are just a few of the problems, and local nonprofit Disability Art and Culture Project (DACP) is challenging all of these and more with Portland ReelAbilities Film Festival.

[Image description: A man sits in front of a blank canvas, smiling. Behind him a woman, also smiling, prepares a table full of paints.]

May 27-29 at Alberta Rose Theatre, DACP will present a wide range of films all made by, starring and/or about people with disabilities. They include everything from Imber's Left Hand, a feature-length documentary about an artist with ALS whose painting process and style change dramatically as his body degenerates, to a three-minute comedy about a woman whose prosthetic hand falls off during a dance audition. View the full schedule here.

We're most looking forward to two showings during the festival. The first is Saturday Social Justice Night. DACP will show three films, all dealing with disability and social justice issues, followed by comments and discussion. This is exciting because disability is rarely considered in the context of social justice; more often it is considered as a health or medical issue. The second showing we are looking forward to is on Sunday night when DACP will screen films submitted by local filmmakers. Many of the local filmmakers will be at the theater, and we can't wait to meet them and hear what they have to say!

Moderator Kathy Coleman and panelists Cheryl Green, Courtney Hermann and Bryony Nesbitt spoke about disability representation in film and tv.

[Image description: Four adults seated in a row in front of a dark blue curtain. Electrical cables are visible on the floor beneath their chairs.]

Beyond showing audiences more nuanced representations of the disability community, DACP also wanted to equip more social justice-minded folks with the tools to make films, as well as amplify the voices of media makers from marginalized communities. What does this mean? Last week, one of DACP's board members, Cheryl Green, taught two free filmmaking classes. Participants storyboarded, filmed and edited one-minute movies on their personal devices (smartphones, tablets, laptops, etc.). These will be posted on the Portland ReelAbilities Facebook page. In addition, DACP filmed a panel about disability representation in film and tv with media makers from marginalized communities in front of a live audience, which will be available to watch online in June.

Portland Reelabilities Film Festival is Portland's first disability-themed film festival, one of fourteen ReelAbilities Film Festivals presented across the U.S. Buy tickets for the festival here.

Disability Art and Culture Project was one of Northwest Health Foundation's Learning Together, Connecting Communities partners. We've also sponsored several of their events.

"We are all born (in)."

'Together, we can erase the divide between “us” and “them” and celebrate schools and communities where all individuals are embraced and included.'

A mapping exercise from the 10th Annual All Born (In) Conference.

On April 23rd, 2016, Northwest Down Syndrome Association (NWDSA) and All Born (In) will host their 11th annual All Born (In) regional cross-disability conference. This conference—aimed at parents, educators, providers, self advocates and civic leaders—teaches best practices for embracing disability and reaching and teaching all people.

NWDSA and All Born (In), sister organizations, believe in full inclusion and public understanding and acceptance. They are tireless advocates for inclusive education. For example, they offer a Kindergarten Transition Workshop to help parents of young children with developmental disabilities become advocates for their kids at school. NWDSA/ABI also led Think College Inclusion Oregon—a coalition of middle and high school students, families, education professionals and Portland State University faculty—to seek funding for an inclusive college program at PSU. They succeeded in obtaining a $2.5 million grant from the U.S. Department of Education to implement the program.

"Special education is supposed to be a service, not a place," said All Born (In) Executive Director Angela Jarvis-Holland in a recent article in The Portland Tribune. 

The 2016 All Born (In) Conference will include more than 30 workshops on a range of topics, everything from "Behavior in the Early Years: Ideas for When the Going Gets Tough" to "Economic Freedom and Rights." There will also be two keynote speeches by Dr. Richard A. Villa and Keith Jones.

We at Northwest Health Foundation are particularly excited about Keith Jones' keynote "Soul Touching Work to Increase Access, Inclusion, and Empowerment at the Intersection of Race and Disability." Keith Jones is a disability rights activist, composer, producer and hip hop artist. He also identifies as a person with a disability. 

You can get tickets for All Born (In) Conference here.

Northwest Down Syndrome Association is a Kaiser Permanente Community Fund funded partner.

Westside Community Garden of Roseburg Brings All Sorts Together

Planting day at westside community garden of roseburg.

Westside Community Garden of Roseburg is a fantastic example of collaboration between organizations and community members. All kinds of people worked together to make this lot, located next to Roseburg United Methodist Church, a space for inclusion and growth.

UCC Nursing Group walking the Chartres labyrinth after weeding it.

Westside Community Garden provides "a communal and educational space for growing local, fresh and organic food while building a supportive community" in Roseburg, Oregon. So far, the space includes 16 foot by 16 foot garden plots, raised beds, three labyrinths, a butterfly garden, a bamboo garden, a mushroom garden and, soon, an accessible forest garden.

It would take a LONG time to list all of the organizations and people who have contributed to the Garden, so we'll limit ourselves to highlighting a few here: 

David Fricke, Executive director of Umpqua Valley disAbilities Network, sitting on the edge of one of the raised beds.

Umpqua Valley disAbilities Network plays a key role in ensuring the Garden is accessible to people with disabilities. They were responsible for creating raised beds so that people who can't crouch or bend over to reach the ground can still garden. They've worked hard to make other parts of the garden accessible, too.

accessible wooden walkway in progress.

An Eagle Scout project contributed an accessible plank walkway with wheelchair ramps.

Meals on Wheels of Roseburg and others take advantage of the produce grown in the garden, distributing it to hungry residents in need of healthy food.

We could go on and on. In short, Westside Community Garden is an amazing collaborative effort contributing to the physical, mental, social and spiritual health of Roseburg's community members.

Northwest Health Foundation supported Westside Community Garden of Roseburg through a Learning Together, Connecting Communities grant to Umpqua Valley disAbilities Network in 2014.

VIDEO | Momentum Alliance and Metro Ask About Equity

What do community members in the Portland metro region have to say about equity? Momentum Alliance and Metro found out, and they made this video so that we could know too!

We will show up for equity, Metro and Momentum Alliance! Thanks for asking, and thank you for including voices that represent the diversity in our region.

...

A short history: Momentum Alliance started with a video--a documentary actually--called "Papers: Stories of Undocumented Youth." The founders of Momentum Alliance were members of the youth crew that helped produce and distribute "Papers" nationally. Since their founding, Momentum Alliance remains committed to being youth-led and youth serving. Their board is two-thirds youth (under 25).

Momentum Alliance was founded with a grant from the Kaiser Permanente Community Fund at NWHF. They are also a Lead Organization for one of our Healthy Beginnings+Healthy Communities Organizing Grant communities.

Happy Birthday, Americans with Disabilities Act!

July 26th, 2015 marked the 25th anniversary of the Americans with Disabilities Act, and some of our partners went all out with their celebrations.

Southwest Washington Disability Alliance (SWWADA) hosted a picnic for people with disabilities, their families and friends. The afternoon included field games, sensory play, friendship and the opportunity to connect with an accepting environment and community resources.

SWWADA's two most popular members, Rojo and Smokey the therapy llamas, attended as well, both wearing superhero costumes. They gave the guests lots of carrot-y kisses.

The Portland Office of Equity and Human Rights, the Portland Commission on Disability and their community partners hosted an event the same afternoon at Immigrant & Refugee Community Organization (IRCO). Members of the Disability community were invited to share their stories. Storytellers included Keith Scholz, the chair of OPAL Environmental Justice Oregon's Bus Riders Unite Leadership Committee, and Inclusive Arts Vibe Dance Company (IAVDC).

In the evening, Disability Art and Culture Project (DACP) held a Happy Birthday dance at Zoomtopia, where guests rocked out to "We Are Family," "Don't Stop Me Now," and "Got to Give It Up." So, all in all, it was a pretty fantastic day.

IRCO, OPAL Environmental Justice Oregon and DACP were all funded partners in our Learning Together, Connecting Communities cohort. SWWADA is funded by a Healthy Beginnings+Healthy Communities Organizing Grant.