As we continue to navigate the world of virtual celebrations, this year we are pleased to celebrate International Day of People with Disabilities (IDPWD), December 3, on an online platform. Halifax Regional Municipality and Halifax Public Libraries, in collaboration with members of the community, have put together this virtual portal to celebrate the disability community in HRM. This year’s theme is “Not All Disabilities Are Visible” and highlights the diversity of disability in our community.
Jump to topic:
- A history of IDPWD
- Video & Transcript: Official Proclamation - IDPWD in Halifax, Mayor Mike Savage
- Video &Transcript : Official Proclamation - IDPWD in Nova Scotia, Premier Stephen McNeil
- Event information: SHEroes Rising Symposium
- Event information: Bluenose Arts and Ability Film Festival
- PAANS Scholarship recipients
- Video & Transcript: One in Five Canadians
- Video & Transcript: Changing the Conversation About Disability
- Video & Transcript: Disability - How You See Me
- Video & Transcript: Understanding Disabilities
- Video & Transcript: I'm Not Your Inspiration, Thank You Very Much
- Video & Transcript: What are Learning Disabilities?
- Video & Transcript: Hidden Disabilities
- Video & Transcript: Raising Awareness of Invisible Disabilities
- Video & Transcript: Invisible Disabilities - Seeing Others with Compassion
- Video & Transcript: Service Dogs and Invisible Disabilities
- Video & Transcript: Invisible Disability
A history of IDPWD
In 1976, the United Nations General Assembly proclaimed 1981 as the International Year of Disabled Persons. The goal was to call for a plan of action all national, international, and regional levels of government to focus on equal opportunities, rehabilitation for, and prevention of disabilities. The theme of the 1981 event was Full Participation and Equality. The theme encouraged the rights of people with disabilities to take part in all aspects of life and development of their societies, which includes living conditions equal to those of the able-bodied and an equal share in improving conditions resulting from socio-economic development.
The United Nations declared 1983 to 1992 to be the Decade of Disabled Persons. That decade was to give governments and organizations a timeframe in which they could organize activities recommended in the World Programme of Action.
The Convention on the Rights of Persons with Disabilities was drafted by the UN in 2006, signed by Canada and 19 other countries in 2007. That convention is the 21st-century’s first human rights treaty adopted by the General Assembly and provides that states signing it should enact laws and other measures to improve the rights of people with disabilities. The convention also abolishes legislation, customs, and practices that discriminates against people with disabilities.
Canada signed the Optional Protocol in 2018.
This year's theme, "Not all Disabilities are Visible" focuses on awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders and cognitive dysfunctions, among many others.
Official Proclamation: IDPWD in Halifax
Mayor Mike Savage proclaims December 3, 2020 as International Day of People with Disabilities in Halifax, Nova Scotia.
Hi, I’m Mayor Mike Savage. As we all know, the COVID-19 pandemic has resulted in isolation, disconnect, disrupted routines, and diminished services. These factors have greatly impacted the lives and mental well-being of individuals with disabilities around the world. This includes individuals with invisible disabilities – in other words, disabilities that cannot immediately be seen just by looking at someone. In Canada, about 1 in 5 people identify as having a disability; however, you wouldn’t be able to identify all of these people just by looking at them.
Individuals with invisible disabilities can have symptoms including but not limited to: debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences, and mental health disorders, as well as hearing and vision impairments. While they may not appear to have a disability from the outside, these symptoms can often impact an individual’s daily life; the impacts can vary from person to person.
According to the World Health Organization’s World Health Report on Disability, it’s estimated that 450 million people are living with a mental or neurological condition. Of these people, around two thirds of them will not seek professional medical help, largely due to neglect, discrimination, and stigma around individuals with disabilities.
So it is very important to remove barriers for all people living with a disability, both visible and invisible. The Halifax Regional Municipality is striving to remove these barriers, in part by creating an Accessibility and Inclusion Strategy, which is currently in development.
In recognition of International Day for Persons with Disabilities, December the 3rd, 2020, I will now read the official proclamation:
WHEREAS there are over 1 billion people living in the world with some form of disability;
Persons with disabilities not only face physical barriers but also social, economic and attitudinal barriers. Persons with disabilities are the world’s largest minority group. Persons with disabilities and the issue of disability have remained largely invisible in the mainstream development framework and its processes;
On March 11, 2010 Canada ratified the UN Convention on the Rights of Persons with Disabilities, with Nova Scotia providing support. The theme of the 2020 International Day of Persons with Disabilities is ‘Not All Disabilities Are Visible’;
The theme focuses on awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders and cognitive dysfunctions, among many others.
THEREFORE, be it resolved that I, Mayor Mike Savage, on behalf of all of Regional Council, on the eve of the International Day of Persons with Disabilities, do hereby proclaim December the 3rd, 2020 as “International Day of Persons with Disabilities” in Halifax and that as a municipality, we can and must promote the participation of individuals with disabilities in leadership positions.
Official Proclamation: IDPWD in Nova Scotia
The Honourable Stephen McNeil, Premier of Nova Scotia, proclaims December 3, 2020 as International Day of Persons with Disabilities in Nova Scotia.
December 3 is International Day of Persons with Disabilities.
It’s a time to promote the rights and wellbeing of persons with disabilities and raise awareness to the situation in every aspect of political, social, economic, and cultural life.
This year’s theme is “Not All Disabilities Are Visible.” It reminds us that many disabilities are not immediately apparent, like mental illness, sight or hearing impairments, neurological disorders, and cognitive dysfunctions. It also reminds us that we never know the battle someone else might be facing, and the simplest thing we can do for one another is to make sure we are being inclusive by giving each other the chance, by not judging one another, and by being respectful.
So today, let’s all decide we’re going to spread the message of an inclusive society, a society where everyone, regardless of their ability, has the opportunity to not only participate, but to reach their goals. And remember, kindness matters.
SHEroes Rising Symposium: The Spirit of Women With Disabilities
On Thursday, December 3, 2020, guests will come together to celebrate the spirit of women with disabilities in Nova Scotia at The Sheroes Rising Symposium (click to register on Facebook). This virtual event is being held on the International Day of People with Disabilities.
In the morning, Suzanne Rent, coordinator of the Not Without Us Project, which is a partnership between the Nova Scotia League of Equal Opportunities and Easter Seals Nova Scotia, will present the What We Heard report on the project. Over several months, Rent met with women with disabilities who’ve experienced domestic violence, as well as the staff at organizations that serve these women. This report highlights much of what she heard about being a woman with a disability trying to escape intimate partner violence. These women and the staff at women-serving organizations provided solutions that helped shape several recommendations in the report. The goal of the project is to help shape accessibility standards so that women with disabilities can safely leave situations of domestic violence.
The afternoon will be dedicated to sharing the stories of several extraordinary women with disabilities. Michelle Mahoney, Julianne Acker-Verney, Jillian Banfield, Grace Han, Anna Quon, and Milena Khazanavicius will share stories that are inspiring, funny, and show us the importance of accessibility in our communities.
Executive Director, Nova Scotia Advisory Council on the Status of Women
Standing Together Introduction
Stephanie MacInnis-Langley is Executive Director of the Nova Scotia Advisory Council on the Status of Women. She reports directly to the Minister responsible for the Advisory Council on the Status of Women and represents Nova Scotia in the federal-provincial-territorial forum of Status of Women. She currently oversees Standing Together to Prevent Domestic Violence.
Prior to her work in government, she developed and implemented a shelter service for abused women and their children in rural Nova Scotia. Stephanie has maintained a strong focus in community development throughout her career.
Minister of Community Services, and Minister responsible for the Advisory Council on the Status of Women Act, Government of Nova Scotia
Kelly Regan was first elected to the Nova Scotia Legislature in June 2009 and was re-elected in the 2013 and 2017 provincial elections as the Member for Bedford.
In June 2017, Premier Stephen McNeil re-appointed Kelly to Executive Council as Minister of Community Services, and Minister responsible for the Advisory Council on the Status of Women Act.
She has previously served as Minister of Labour and Advanced Education, which included responsibility for the Apprenticeship and Trades Qualifications Act and the Workers' Compensation Act (except Part II}. Kelly has also previously served as Minister responsible for Youth and Minister responsible for the Voluntary Sector. Kelly serves on the Treasury and Policy Board cabinet committee.
Prior to entering politics, Kelly worked as an award-winning television director, producer, and writer.
In November 2018, Big Brothers Big Sisters of Greater Halifax honoured Kelly with its Inspire Award for Public Service. She was named a Progress Club "Woman of Excellence" in the Communications and Public Affairs category in November 2012. Kelly is an honours graduate of the University of Waterloo's Co-op English Program/ Legal Studies Option.
Kelly has been married to Geoff Regan, MP Halifax West, former Speaker of the House of Commons, since 1993; they have three adult children.
Michelle Mahoney was born with Arthrogryposis, which is a lack of muscle in joints of the body. She has limited mobility in her arms, hands, and knees, and she was born with clubbed feet and a dislocated hip. The doctors told her parents she would probably never walk. Michelle graduated from St. FX University in 1995 with a Bachelor of Arts in sociology. She’s been working at Dalhousie University for the past 21 years. She sits on the Board of Directors for Easter Seals Nova Scotia, and the executive board of Easter Seals Canada. She enjoys downhill skiing, surfing, and spending time with her husband, family and friends, and new dog, Gus. Her life motto is “I can do anything, it just might take me a little longer. I am unstoppable.”
Make a Magnificent Mess: Me, Myself, and my Art
Anna Quon is a Halifax poet, novelist, visual artist and filmmaker who likes to make paintings and short animated films of her original poetry. She is also a middle-aged, mixed race Mad woman, a writing workshop facilitator, and maker of messes. Anna holds a Bachelor of Arts in English literature and has worked contracts in the not-for-profit sector all her adult life, except for several years when she worked as a freelance writer. She has traveled as far as the Czech Republic and Russia to work on her writing, spent a year of her life in the mental hospital, likes to swim and walk and spends way too much time on social media for her own good. Anna's motto is “Be kind, be careful, be curious, but above all be kind.”
Julianne Acker-Verney embraces her life as a woman with disabilities, sharing the adventure with her partner Tim in Halifax, Nova Scotia. She is currently completing her Master of Arts in Women and Gender Studies, jointly provided by Saint Mary’s University and Mount Saint Vincent University. Julianne has extensive experience as a self advocate and as a supporter of other persons with disabilities seeking access and inclusion. She is a community-based and academic researcher with more than 20 years experience exploring, and writing about, issues of importance to Canadians with disabilities. Julianne is active in social justice initiatives and organizations including as a past member of the Independent Living Nova Scotia Association board of directors and the Alexa McDonough Institute for Women, Gender and Social Justice steering committee. She currently sits on the Halifax Lancers board of directors and chairs the Halifax Lancer Therapeutic Riding committee.
My Bike is My Mobility Aid
Jillian Banfield has had arthritis since she was 14 months old, so she’s spent her whole life with chronic illness and disability. Due to arthritis damage and pain, she can no longer get around by walking, but she can get around by bike. Jillian has found freedom through cycling! She advocates for cycling infrastructure and policies that improve mobility for people with disabilities.
Grace Han was born in Seoul Korea but moved to Toronto at age of 12. She was born with cerebral palsy, which affected her speech and body movements, but she was able to grow up like other children. Grace completed her undergrad degree at a small Bible college in Calgary, Alberta, and moved back to Toronto after graduating with her bachelor degree. She worked for a non-profit organization until she moved to Nova Scotia to pursue a Masters of Divinity. Her passion is to share her journey as a woman with disability and encourage people to embrace and love who they are.
The Good, the Bad, and the Sexy of Being a Woman who is Blind
Since losing her sight due to diabetic retinopathy 26 years ago, Milena Khazanavicius has been riding the roller coaster of life dealing with depression, sky diving, volunteering with organizations such as Frontier College, CNIB, Friends of the Public Gardens, and advocating for all pedestrians for safe streets in Nova Scotia. Milena says, “Nothing makes me happier than to hear my fellow humans laugh, especially when I cannot some days myself. I believe in a quote: “If there is not a chair at the table for you, build or bring your own”
Breaking myths about blindness, you’ll find Milena stirring up the dust on the sidewalks with her guide dog Louis and her two transplanted organs, in Nova Scotia and beyond.
Suzanne will do the Opening and Closing proceedings for the event, and will present her findings in the Not Without Us project.
President and CEO, Easter Seals Nova Scotia
Since 2017, Joanne Bernard is the President and CEO of Easter Seals Nova Scotia. Prior to that, Joanne was Member of the Legislature for Dartmouth North and appointed to cabinet in 2013 as Minister of Community Services. She has a long history of leadership in the non-profit sector particularly with women fleeing domestic violence through her work at Alice Housing. Joanne also established the Marguerite Centre in 2002 and currently sits on the Board of Governors and Alumni Association for Mount Saint Vincent University and the Halifax Chamber of Commerce.
Nova Scotia League of Equal Opportunities
After serving on the board for the Nova Scotia League for Equal Opportunities for 14 years, Sherry now manages the organization that is both a conduit and a catalyst to bring forward issues and challenges to change the narrative for persons with disabilities. She holds a certificate in non-profit leadership and management from Dalhousie University. In addition to serving as executive director for Independent Living Nova Scotia, Sherry also led the development of Voice Print, now Accessible Media Inc. (AMI) in the Atlantic region; chaired the Partnership for Access Awareness Nova Scotia (PAANS) committee; and was a member of the Nova Scotia Persons with Disabilities Employability Table. Sherry is also a founding member of the Nova Scotia Disability Partnership and the Federation of Community Organizations.
PAANS, a committee within the Nova Scotia League of Equal Opportunities (NSLEO), offers annual scholarships to assist Nova Scotians with disabilities in their pursuit of their post-secondary education and training. Learn more about this year’s recipients.
Brayden has a clear vision of what he wants to do in life. It’s his long-held desire to work outdoors, particularly in the forestry sector. He has been accepted into the Maritime College of Forest Technology in Fredericton, New Brunswick. Brayden will be a true asset to the MCFT program, and an example of one who possesses commendable personal resilience and dedication to task.
Brayden has displayed a steadfast commitment to overcoming barriers with a strong commitment to active citizenship through serving and supporting those in need. Serving his community and protecting the environment will remain a driving force in his life for years to come.
My name is Eric Lewis. In June 2020, I graduated from Sydney Academy with Higher Honours. I have always had a love of the outdoors and despite having disabilities, I felt a real sense of accomplishment when I was in the garden. I have known for many years that horticulture was the only career I wished to explore. I am excited to be in my first year at Kingstec College where I am studying Horticulture and Landscape Technology. In Canada, my field is recognized as an important industry and I cannot think of a more rewarding profession. With the Covid-19 pandemic, it has become essential that produce be grown within our own borders, both nationally and provincially. My career goal is to operate a viable business in my hometown of Sydney, where I will produce high quality products, using ecologically sound practices. I also want to give back and provide employment for people with permanent disabilities.
With impeccable character as well as outstanding academic ability and commitment, Julia consistently demonstrates a love of learning and the dedication required to succeed in university and in her professional life as a health professional. She has consistently maintained high academic standing throughout her entire school career, receiving awards for highest distinction at every level of her schooling.
Julia continues to be an exceptional student and concurrently contributes greatly to her school community. She is a member of the school band program and several school groups such as Headstrong, the Booster Club and the Decorating Committee, the Safe Grad Committee and the Interact Group. Julia served as the school’s representative for both the Living with Mental Illness & Addiction Conference and Encounters with Canada.
Julia plays an integral role in her community through her volunteer involvement with the ALS Society, Youth Peer Tutoring/Mentoring, the SPCA and the Glace Bay Health Care Complex. She also referees local volleyball games and provides childcare to various community members.
My name is Kathleen Perrin. I am 17 years old and I live in Beaver Bank, Nova Scotia. I have recently graduated from Lockview High School in Fall River. Throughout my school years I have worked extremely hard to overcome my learning disabilities (ADHD, Dyslexia and Dysgraphia), and the adversities that come along with them. I have been blessed to have had amazing tutors and teachers who have supported me and helped me to achieve my goals; for this I am greatly thankful. I am determined, motivated and proud of my learning disabilities, and I refuse to allow my diagnoses to define my academic future. In the fall I will be attending Dalhousie University for a Bachelor of Science in Nursing. I am excited to begin working towards my dream career as a paediatric nurse! I am incredibly thankful to have been selected for the PAANS- Bruce Mills Honorarium Scholarship. Thank you so much for the consideration and generosity.
In terms of leadership and dedication, Lauren has been an extremely valuable asset to Richmond Education Centre and Academy and the leadership committee. She has developed as an excellent role model for youth of all ages, and her dedication to the school atmosphere excels that of most of her peers. Her willingness to give of her personal time and dedication to organizing events and school activities is quite admirable.
Lauren is part of a committee that not only gives to others and promotes responsibility, organization and independence, but the reward she gets for her commitment is seeing that she has made a difference to her peers. Her dedication does not end within the school as she often volunteers in community events that involve people of all ages. She has spent time visiting senior homes and raising funds and food to support both her community and communities on a global scale.
Hi! I’m Rita DeLisle and I have been a student, in some capacity, since the pre-digital age. Today, I am an Interdisciplinary Fine Arts student at the Nova Scotia College of Art & Design (NSCAD) University. In 2010, I developed fibromyalgia and spent several years struggling to cope with the persistent pain and fatigue that were making me an unreliable employee. Fortunately, at NSCAD, my disability is being cheerfully accommodated and I have since expanded my art-skills-repertoire from clay and fibre to drawing, mold-making and print-making. I intend to continue my studies while developing my portfolio and I hope, one day soon, to have works for sale and workshops to offer. I am both honoured and grateful to have been selected for a PAANS scholarship — it is a great help! Many thanks to the Selection Committee!
Sophie LeBlanc is a graduate of Prince Andrew High School’s International Baccalaureate program. She is now pursuing a BSC in Kinesiology at the University of New Brunswick with the goal to become a physiotherapist.
Sophie has lived with Crohn’s disease and Arthritis for over 10 years. She is no stranger to the challenges living with invisible auto-immune illness. Despite the challenges, she has resisted being labelled a “sick kid” and made every effort to remain active. She served as Student Council Head of Athletics, Captain of the volleyball team and Stage Manager for her high school’s production of Mamma Mia! She was chosen as her Class of 2020 Salutatorian.
Sophie also dedicates her time to volunteering and community. She participates in many fundraising and research events for Crohn’s and Colitis Canada and served as the Halifax Chapter’s Honourary Youth Chair in 2013. Sophie was the Maritime’s pediatric representative for Crohn’s and Colitis Canada’s PACE Network conference in 2017, providing input on the Top 10 research initiatives from a patient’s perspective; and she was a Patient Engagement Committee member for the IMAGINE network. She also volunteers with Brigadoon Village, rescue missions and Canadian Blood Services.
It is her own experience as a patient that has inspired Sophie to pursue a career in healthcare, hoping to one day help others to better manage the physical symptoms of living with chronic illness.
Bluenose Arts and Ability Film Festival
Schedule of events
BAAFF started 6 years ago as a weekend festival highlighting filmmakers during IDPWD. We’ve grown and now celebrate all art forms and hold programming throughout the year!
Our entire schedule will be livestreamed.
Flag Raising Event | 8:00-8:30 AM
Mayor Mike Savage will be reading a proclamation and raising the BAAFF flag to mark our sixth year of celebrating inclusion of all persons on the UN International Day of People with Disabilities.
Book Launch + Art Exhibit | 7:00-9:00 PM
Join author, Tova Sherman, as she releases her newly published book, Win, Win, Win! The 18 Inclusion-isms You Need To Be A Disability Confident Employer alongside the local artists with disabilities whose artwork illustrated.
Digital Matters Showcase & Launch of the “Toolkit” | 6:30-9:00 PM
Tune in to meet seven incredible young artists with disability as they launch their work into a digital landscape.
- Tyler Simmonds
- Megan Reed
- Mable Wheeler
- Hanley Smith
- Emma Mader
- Truelee Love
- Hwahmee Joh
This showcase will also feature a presentation on the Digital Matters “Toolkit” for artists and arts organizations to overcome barriers to success online.
Grant Writing Workshop | 10:00 AM-1:00 PM
Join Kelsey MacDonald (Logistics Coordinator, BAAFF) and Heidi Hallett (Artist) in a beginners workshop on grant writing.
Artist Roundtable | 2:00-5:00 PM
BAAFF will be hosting a round table conversation with BIPOC Artists about Creating Art During a Pandemic. Details to follow.
Songwriter’s Circle | 7:00-9:00 PM
Join us for an evening of great music, stories and laughter with local singer/songwriters with disabilities.
One in Five Canadians
1 in 5 Canadians are living with a disability. Let’s remove the barriers to their potential.
[This video shows a montage of clips that match up with what the narrator is describing. For instance, when the narrator says, “a street,” it shows a street, and it shows the inside of an office when she says, “if you’re at an office.” At the beginning, the clips are very narrow with large black borders on either side. As the video goes on, the clips become wider and those black borders become smaller, until eventually the picture fills up the entire screen.]
It's pretty simple actually. Whether on a street, or a boulevard, or a secret path, a trail, or some sorry excuse for a dirt road, if you're on a train, tram, ship, boat, plane, a ferry, or a merry-go-round, if you're at an office, a school, or a playground, if you're at the beach, the bar, a party, or gallery. At a one-star restaurant, or a two-star motel. Upstairs, downstairs, basement, or bathroom. If you’re blind, if you're deaf, if you're tall, small, or tiny. If you've got two legs, one leg, no legs, or you're all legs. Whether you're a senior, have quadriplegia, or you're a Paralympian. If you've got a cane or crutches, walker or wheelchair, it's time to build a world where Everyone can go Everywhere.
Changing the Conversation About Disability
[The video opens with RICK HANSEN wheeling down a boardwalk. “The Rick Hansen Foundation” is written in write text.]
RICK HANSEN: When I had my injury in 1973, I was pretty much told not to expect very much living with the kind of disability that I was going to face. And, you know, what's interesting is that at first, I really started to believe that because with my own attitude about what life with a disability was all about.
[A clip is shown of JESSICA speaking into a microphone at a radio station.]
JESSICA: After I had my accident, I definitely had to get used to how other people perceived me. It wasn't just how I perceived myself anymore but how my friends and family and the general public looked at me.
[A clip is shown of KAREN writing in a notebook.]
KAREN: I did face teasing and that kind of thing, where you're called Captain Hook or something like that, which is never a fun thing to go through. But most of the things were just barriers that I put on myself.
[A clip is shown of MALLAZ with his guide dog.]
MALLAZ: Of course, you face people with different attitudes about blindness. Some of them, they think that blind people are in a certain closed black spot, that they don't know anything about the world around them.
[A clip is shown of EWA in a classroom.]
EWA: One of my favorite quotes from one of the students that we worked with who's in a chair is "I want people to see me for me, not the chair."
RICK HANSEN: One of the biggest barriers that people with disabilities face is accessibility. And if we look at the built environment, it isn't just getting into a building for people who are in wheelchairs. It's people who have mobility challenges; people with visual or hearing challenges; people with some cognitive challenges and recognize signages and locations. And it's not just people who have those existing permanent disabilities. It's also those who have perhaps a temporary injury.
[As RICK is speaking, there is a video montage of several clips. These include a woman in a wheelchair waiting for a train, someone pushing a stroller, someone walking with a guide dog, and someone walking down a flight of stairs using crutches.]
EWA: What we're trying to do is move the world on from a medical model of disability, where what we think about disability is "This person's in a chair. This person has a spinal cord injury. This person is deaf." That's not disability. Disability only arises when you slot that alongside a barrier. So what we want to do is remove those barriers so that being in a chair is no longer a disability because it doesn't hold you back from doing anything.
RICK HANSEN: When we left on our journey on the Man In Motion World Tour, it seemed like an impossible dream. Who would've ever imagined that by starting that journey, that it would turn from a Man In Motion journey to a global movement, filled by many in motion who are driving towards something that's far larger than any individual and that together, anything is possible.
[As RICK is speaking, there is a montage of clips of him on the Man in Motion World Tour. RICK is shown wheeling in different places around the world.]
JESSICA: What I really want from the community is for them to recognize that we are equals and that they shouldn't look down on us.
EWA: It's really important that everybody gets an equal chance to take part in the things we do. Volunteering with the Foundation, making a donation, or thinking about your own attitudes and your own perceptions, and considering disability and accessibility in everything you do – those are all things that people can do to change the lives of people with disabilities.
RICK HANSEN: I see today, more than ever, that the original dream of the Man In Motion tour is possible. We can't get there on our own. The solution that we've defined is a big incredible challenge. It's going to require millions and millions of people getting engaged. It's going to take their time, their talent, and yes, some of the resources that are necessary for us to be able to turn this dream into a reality. We need your help and we can't get there alone.
Disability: How You See Me
[Six different people are speaking at different points throughout the video. The first four people to speak are women, and the fifth and sixth speakers are men.]
PERSON 1: I feel so blessed to be able to just live my life and have people be motivated by it.
PERSON 2: I have a spinal cord injury and so when I was seeing people roll by, I was like wow, so that's what I'm gonna look like.
PERSON 3 (speaking while using sign language): I think I always knew I was different. I knew other kids can hear and I can’t.
PERSON 4: I was born paralyzed. I was born with spina bifida, so I've been paralyzed my whole life and it's the only life I know. So, I had to kinda grow into learning I was different.
PERSON 1: My biggest insecurity is my legs, so I decided hey if that's my biggest insecurity then I'm gonna start a jean line. And all of the pictures are based around my jeans and my legs and other people's legs. And that's where I realized that it's okay to be different because once you embrace it your entire world changes.
PERSON 5: People usually…they don’t know how to react to me a lot of times. So, like…I’ll make little jokes like, “Hey calm down, it’s ok. I’ll be ok.”
PERSON 6: I would have people treat me as if I wasn't really there and I would have people treat me like they didn't want anything to do with me. And perhaps it was because they were scared and they didn't know any other response.
PERSON 1: One of my favorite things is when I'm out in public and I have all my girls with me who are all in chairs who are all gorgeous and we literally love when we see heads just turn.
PERSON 4: Society doesn't correlate disability and being attractive. We are beautiful people. Everyone's beautiful in their own way but we can be stylish, we can be gorgeous and stunning and fabulous as I like to say because yes, I see myself as being fabulous.
PERSON 2: Being a dancer you know once a dancer always a dancer I didn't stop so I would go out to the clubs and I would get my boogie on and I was surprised by how guys would approach me and be like "hey you're hot". And they wouldn't say "you're still hot", they would say, "you're hot".
PERSON 6: There is the black and white there's the bad and there's the good, so as long as you're focusing on the good then the bad just seems to melt away.
PERSON 1: We're only given one life and you gotta be proud of it.
PERSON 2: You want me to bust a couple of moves? (she starts to dance from the waist up) What? Oh, oh, oh, oh.
DIRECTOR: (laughs) Perfect, let's get a cut.
[AMBER is dribbling on the basketball court while wearing a basketball uniform.]
AMBER: I like to play basketball. How about you?
[IAN is doing down the hall in his wheelchair. In the next shot, a teacher is pushing him on a scooter on the floor.]
IAN: I like to draw. How about you?
[MIA is on a swing at the playground with her friends. She is wearing leg braces and you can see a wheelchair in the corner of the screen.]
MIA: I love hanging out with my friends. How about you?
AMBER: Mia was born with muscular dystrophy. Basically that means some of her muscles are getting weaker rather than getting stronger. Ian's legs aren't strong either, that's why he uses a wheelchair. He may not be able to run up and down the soccer field. but he's really good at drawing. In fact, he's really good at a lot of things. A disability is a condition that affects a person's body or brain. Mia and Ian have disabilities that you can see, but some people have disabilities that you can't
See, like me.
MIA: Amber has dyslexia. This causes letters on a page to look scrambled.
[An animation of words and letters on a page getting scrambled appears on the screen.]
MIA: It takes her longer to read and learn than her friends.
AMBER: And sometimes I have to leave the classroom to get extra help from a different teacher.
MIA: But you know what? She doesn't need any extra help on the basketball court. She can even dribble between her legs.
[Amber is dribbling on the basketball court and shoots a hoop.]
AMBER: We're all alike in some ways and different in other ways. That's what makes us special. I like being me. How about you?
I’m Not Your Inspiration, Thank You Very Much
[The audience claps for Stella Young, who is sitting in her wheelchair on a stage.]
I grew up in a very small country town in Victoria. I had a very normal, low-key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. And when I was 15, a member of my local community approached my parents and wanted to nominate me for a community achievement award. And my parents said, "Hm, that's really nice, but there's kind of one glaring problem with that. She hasn't actually achieved anything." [Laughter]
And they were right, you know. I went to school, I got good marks, I had a very low-key after school job in my mum's hairdressing salon, and I spent a lot of time watching "Buffy the Vampire Slayer" and "Dawson's Creek." Yeah, I know. What a contradiction. But they were right, you know. I wasn't doing anything that was out of the ordinary at all. I wasn't doing anything that could be considered an achievement if you took disability out of the equation.
Years later, I was on my second teaching round in a Melbourne high school, and I was about 20 minutes into a year 11 legal studies class when this boy put up his hand and said, "Hey miss, when are you going to start doing your speech?" And I said, "What speech?" You know, I'd been talking them about defamation law for a good 20 minutes. And he said, "You know, like, your motivational speaking. You know, when people in wheelchairs come to school, they usually say, like, inspirational stuff?" [Laughter] "It's usually in the big hall." And that's when it dawned on me: This kid had only ever experienced disabled as objects of inspiration. We are not, to this kid -- and it's not his fault, I mean, that's true for many of us.
For lots of us, disabled people are not our teachers or our doctors or our manicurists. We're not real people. We are there to inspire. And in fact, I am sitting on this stage looking like I do in this wheelchair, and you are probably kind of expecting me to inspire you. Right? [Laughter] Yeah.
Well, ladies and gentlemen, I'm afraid I'm going to disappoint you dramatically. I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we've been sold the lie that disability is a Bad Thing, capital B, capital T. It's a bad thing, and to live with a disability makes you exceptional. It's not a bad thing, and it doesn't make you exceptional. And in the past few years, we've been able to propagate this lie even further via social media. You may have seen images like this one:
"The only disability in life is a bad attitude."
[An image appears on the screen of a man with one leg amputated from the knee down, the other amputated from the middle of his thigh down. He is swimming. On the side, there is a quote that says, “’The only disability in life is a bad attitude – Scott Hamilton’”]
Or this one: "Your excuse is invalid." Indeed.
[An image appears on the screen of a young boy sitting in a wheelchair in the middle of a gymnasium floor. He is holding a basketball. You can see other children in wheelchairs behind him; they are all wearing the same green t-shirt. On the side of the image, there is a black box with white text that says, “Your excuse is invalid.”]
Or this one: "Before you quit, try!"
[An image appears of a young girl running on a sports field. She is holding a piece of paper in her hand and looking at it with a focused look on her face. On the side of the image, there is a black box with white text that says, “Before you quit, try!”]
These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. [Laughter] And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So, in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."
But what if you are that person? I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. [Laughter] And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective.
And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term "disabled people" quite deliberately, because I subscribe to what's called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses. So, I have lived in this body a long time. I'm quite fond of it. It does the things that I need it to do, and I've learned to use it to the best of its capacity just as you have, and that's the thing about those kids in those pictures as well. They're not doing anything out of the ordinary. They are just using their bodies to the best of their capacity. So, is it really fair to objectify them in the way that we do, to share those images?
People, when they say, "You're an inspiration," they mean it as a compliment. And I know why it happens. It's because of the lie, it's because we've been sold this lie that disability makes you exceptional. And it honestly doesn't. And I know what you're thinking. You know, I'm up here bagging out inspiration, and you're thinking, "Jeez, Stella, aren't you inspired sometimes by some things?" And the thing is, I am. I learn from other disabled people all the time. I'm learning not that I am luckier than them, though. I am learning that it's a genius idea to use a pair of barbecue tongs to pick up things that you dropped. [Laughter] I'm learning that nifty trick where you can charge your mobile phone battery from your chair battery. Genius. We are learning from each other’s' strength and endurance, not against our bodies and our diagnoses, but against a world that exceptionalizes and objectifies us.
I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. [Laughter and applause] Smiling at a television screen isn't going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It's just not going to happen.
I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching "Buffy the Vampire Slayer" isn't referred to as achieving anything because she's doing it sitting down. I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.
Disability doesn't make you exceptional, but questioning what you think you know about it does. Thank you.
What are Learning Disabilities?
So, what are learning disabilities? Well, the term learning disabilities is kind of like a blanket, because it covers a number of different disorders.
[Eleven yellow patch symbols appear on the screen on top of a blue background. Five of them have the name of a difference learning disability written on them. One says, “Dyscalculia,” one says, “Non Verbal Learning Disability,” one says “Dysgraphia, one says, “Central Auditory Processing Disorder,” and one says, “Dyslexia.” All the symbols come together to become one larger symbol that says “LD.”]
Learning disabilities affect how a person takes in verbal or nonverbal information.
[A yellow envelope flies onto the screen and lands on top of a tall stack of papers. There is a total of five of these stacks of papers.]
How they sort, organize, and retrieve that information.
[The claw of a construction machine appears on screen and grabs the top of one of the stacks of papers.]
Their ability to remember it, and even their level of understanding.
[The construction claw flies up to the top of the screen. The camera follows the claw until the stack of papers are gone, and the claw is next to a car meter. The meter says “Understanding,” and the indicator is at the far-left end of the meter.]
People who have a learning disability can struggle with spoken language, listening, speaking, and understanding.
[At this point, the claw and meter symbols are gone, and they are replaced by a white speech bubble on top of a red background. The white speech bubble appears when the narrator says, “spoken language;” it is replaced with an ear symbol when they say “listening,” a pair of lips when they say, “speaking, and a brain symbol when they say, “understanding.”]
Reading and writing can be a challenge, and math can be a real hard stone to move.
[The words “reading” and “writing” appear in the middle of the screen. The word “math,” in much larger font, appears on top of the other two words and falls on top of them, crushing them. A silhouette of a person appears and tries to push the word “math” away but cannot move it.]
And just like how people's taste in fashion can range from socks and sandals, to high fashion on the catwalk…
[At this point, the word “math” and the human silhouette are gone. Two more symbols appear, one of a sock and another of a pair of sandals. The symbols are pushed aside and replaced by an animation of someone walking down a runway. On either side of the runway are yellow circles that represent people in the audience.]
…learning disabilities can also range in their severity and how they affect people.
[The runway animation disappears and is replaced with two of the “LD” patch symbols from before. The patch symbol on the left is much smaller than the one on the right. On top of the two patch symbols is a ruler that goes across the screen.]
Many people with learning disabilities are very intelligent even gifted.
[The previous symbols disappear, and instead you can see a line of lightbulb symbols that lead up to a silhouette of a person who looks like Albert Einstein. Another lightbulb appears next to his head.]
With the right help they're able to learn just as well as anyone.
[The silhouette of Albert Einstein disappears, and the lightbulb moves to the middle of the screen. Five white lines appear and start moving clockwise around the lightbulb.]
The alarm bells ring and the red flag is raised…
[A symbol of an alarm bell appears and starts to ring. That symbol disappears, and a new symbol of a red flag appears.]
…that someone might have a learning disability if they need an unusual amount of effort and help to be successful…
[A symbol of a trophy stands on a floor on the screen. Above the trophy is a red party banner going across the screen. The trophy has the word “Success” written on it. There is a silhouette of a person trying to pick up the trophy, but they cannot manage to move it.]
…Or if they are unexpectedly underachieving at school or work.
[A second silhouette of a person appears on the other side of the trophy, and tries to lift the trophy at the same time as the first person. When they both lift at the same time, the trophy flies up off screen. The camera follows the trophy. The trophy falls again and disappears, leaving an animation of a train in its place]
The impact of having a learning disability and the challenges that often come along for the ride, including attention, organization, social skills, anxiety, and others can change as a person goes through life.
[The camera moves away so you can see the entire train as it moves down the track. The train has five cars, four of which have different terms written on them in the following order, from right to left: “Attention,” “Organization,” “Social Skills,” and “Anxiety.”
From school, to home, to soccer practice, every person with learning disabilities is unique and remains unique is they travel through life.
[The train continues to move down the track. It passes by a school building first, and then a house. Finally, a soccer ball bounces past the train before the train finally exits off the right side of the screen. Music starts to play, and text appears that says, “For more info, talk to a teacher or principal, or contact a learning disabilities association near you.”]
[University students were interviewed about their hidden disabilities. The first time that each student speaks, a caption appears describing what they are studying.]
ETHAN (PhD, Film Studies): It's a little bit like being a foreign-language speaker, being pushed into a completely different country.
JO (3rd Year, English): The connection between what I see and how it is in my head, there is a gap.
RHIANNON (3rd Year, Education and Psychology): Many people kind of don't understand that when you say you're in pain all the time, you're not over exaggerating.
RIA (3rd Year, Maths): I miss cheese so much, and bread. I’d kill to be able to each garlic bread again.
CHARLOTTE (3rd Year, English and Philosophy): Having people understand me, there's still something I'm not quite used to. But I feel like slowly, the world's finally starting to understand what it's like.
[White text appears on the screen that says, “Hidden Disabilities.”]
RIA: I have postural orthostatic tachycardia syndrome which means sometimes when I stand up, my heart can't quite compensate for that and I collapse. And I also have colitis which really affects what foods I can eat. I can't eat gluten, dairy, more than one portion of fruit a day, I'm not allowed oil, I’m not allowed anything high in sugar, and I'm not allowed caffeine because of the colitis, but I have to drink more caffeine because of the POTS.
ELIN (MA, Jewish History & Culture): Whenever I sort of explained fibromyalgia I'm just like, I'm in pain all the time, but there is so much more to it. Fatigue is just like…it’s all-consuming. It’s like having the flu just constantly.
CHARLOTTE: ASD is Autism Spectrum Disorder. It impacts your brain in the sense that the way you react to sounds, to lights, to any sort of external stimuli.
ETHAN: Certain foods I can't eat because the texture is just “blah,” or not liking loud noise because it feels a little bit like someone's bashing a sledgehammer into my skull.
JO: Dyslexia comes in different forms. For example, me, it affects my short-term memory, so my kind of phonemes I forget, so I always get the “e” and “a” mixed up. It's frustrating when you know what you want to say, but as soon as it comes to speaking and like…[she mimics stumbling over her words]
ELIN: Throughout uni I've missed so many lectures.
RHIANNON: If I'm having, like, a flare-up or anything like that, the shower, the water hitting me can be painful. And then I don’t wanna leave the house and it just creates that kind of impact on your daily life.
RIA: I can’t decide last-minute to stay and do more work because I need to have food on me, and I have to be very careful where I study because if it's somewhere where there's not a lot of people, I worry that I'm gonna faint and no one's gonna find me.
ETHAN: The effort of maintaining a facade is exhausting, so in that respect being a student is quite tricky.
CHARLOTTE: It's like everyone's in on the inside joke that you're not part of.
RIA: I think the thing that upsets me the most is when people decide that it's up to them if you can or can’t use the disabled toilet. I very much need it because, I mean, if I collapse, I need the red cord, but in some places I feel like “Oh, is someone gonna shout at me if I use this toilet? Am I better off just risking one without a cord?”
ELIN: I remember one time I got on the bus and it was full and like I sat down because I was in absolute agony, like I couldn't believe it, and this man he was like, “Oh I think you should get out of that seat,” and I just burst into tears.
CHARLOTTE: I had an experience in sixth form where people couldn't reconcile the fact that I had these learning difficulties while I also got decent grades. They were like “Oh, she’s cheating.” The reason we have these external arrangements is because our brains take longer to process things. It's about making us being able to perform the same ability as anyone else.
JO: Sometimes a lot of people will be like, “Oh, you're stupid because you can't spell, you're an English student and you can't spell.” And there is that line between what is just a joke, harmless jokes, and what is actually borderline, you know, bullying.
ELIN: I've had, like, close friends tell me “It doesn't really seem like it's a real thing.” It does sound unbelievable if someone is in pain 24/7, but, like, that does doesn't diminish the fact that people go through it.
CHARLOTTE: In terms of stereotypes as well, like, we're not all maths geniuses.
ETHAN: We don't all have explicitly specific skills in some areas, or we don't always speak in flat tones.
CHARLOTTE: Do you have a special interest? Do you like routine? People like if you fit into a neat category, it makes you easier to understand.
JO: I can't help having dyslexia and all the mental health issues, but there is things out there that actually can support you and help you throughout your journey at University.
RIA: Like, I will say since I've been diagnosed with physical disabilities, I'm a lot more aware of how things would affect others.
CHARLOTTE: Getting involved in student media and the creative industries, I think I have kind of found my place. Having that support network of friends who understand you, that has in turn given me the confidence to speak up if I need help.
ELIN: Just listen. and listen to them complain because that's all you need to do sometimes. If they have to do something to make their life a little bit easier, don't judge them for it.
RIA: I think it would be really helpful if people stopped deciding that it's up to them whether or not they think someone is disabled. Just because someone isn't in a wheelchair doesn't mean that they're not allowed to use that facility.
CHARLOTTE: All I want is to be treated as a human being, like, but also to have an understanding that that is all that anybody who ever diagnosed with autism really needs.
ETHAN: If I'm holding you at arm's length at points in time, it is not because of you. It's because I need that time just to refresh, revitalize, and get back on with things. But, to my friends’ credit, they've always made those allowances for me and they've always understood, and I can't thank them enough for that
[The screen goes white, and black text appears that says, “Not all disabilities are visible. Be kind, be respectful, and never assume.”]
Raising Awareness of Invisible Disabilities
[As the video starts, the screen is black, and there is white text saying “Raising Awareness of Invisible Disabilities.” There is music playing in the background throughout the entire video. A total of eight people speak at different points throughout the video.]
PERSON 1: Every day there are thousands of people with disabilities. These include the physical ones and the invisible ones. The invisible ones are often hard for people to see and thus are not understood easily. Some of these disabilities include ADHD, anxiety, depression, and anorexia to name a few. Here are some stories from those people that they would like to share.
[The screen goes black, and white text appears that says “What disability do you face?”]
PERSON 2: I face invisible disabilities and they are depression and anxiety.
PERSON 3: An ongoing struggle with depression and anxiety.
[The screen goes black, and white text appears that says, “Depression: a mood disorder that causes a persistent feeling of sadness and loss of interest. Anxiety: to frequently have intense, excessive and persistent worry and fear about everyday situations.”]
PERSON 4: I struggle with ADHD.
[The screen goes black, and white text appears that says, “ADHD: a mental health disorder that includes a combination of persistent problems, such as difficulty paying attention, hyperactivity and impulsive behavior.”]
PERSON 5: A disability that I struggle with is dyslexia.
[The screen goes black, and white text appears that says, “Dyslexia: a learning disorder that involves difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words (decoding).”]
PERSON 6: I struggle with anorexia.
[The screen goes black, and white text appears that says, “Anorexia: an eating disorder characterized by an abnormally low body weight, an intense fear of gaining weight and a distorted perception of weight.”]
PERSON 1: Learning disorders.
[The screen goes black, and white text appears that says, “Learning Disorder: an information-processing problem that prevents a person from learning a skill and using it effectively.”]
PERSON 7: Anxiety.
PERSON 8: Depression.
[The screen goes black, and white text appears that says, “What do you wish others knew about your disability?”]
PERSON 3: I wish others knew that I am always giving my one hundred percent, my best foot forward even though that may look different at different times, but I’m always trying.
PERSON 2: Don’t treat us like we are broken people. Like, we are still normal people and sometimes we just need a little bit of help in order to stay present.
PERSON 5: Really contribute towards the situation of helping others, for the people that have dyslexia.
PERSON 1: Knew that patience makes the kids with disabilities a lot happier.
PERSON 4: I wish others like, knew about it or were educated about it because sometimes people just think you are dumb when you really just need more time to take while doing, like, assignments and stuff.
PERSON 8: It would make me feel as if I am hopelessly walking to nowhere. I wish others would know that you shouldn’t wait to reach out.
PERSON 6: Knew that it is possible at any size.
PERSON 7: That my ability to function is a process, and they knew that my sadness isn’t their fault, and I wish that I could control these things but sometimes my thoughts consume my entire being.
[The screen goes black, and white text appears that says, “How does your disability make you feel?”]
PERSON 4: It feels quite rough. It is really like understanding that you have a disadvantage at hand.
PERSON 7: Constant worry, overworking, giving up, confusion, and stressful.
PERSON 3: I would say silent struggle but always pushing through.
PERSON 2: Exhausting, really annoying, frustrating.
PERSON 8: Cold, numb, scary, blank, and indifferent.
PERSON 1: It takes me a while to get a concept and understand it compared to my peers.
PERSON 5: A puzzle in order to solve for what the words are saying.
[The screen goes black, and white text appears that says, “How would you describe your disability?”]
PERSON 4: Having ADHD is sorta like waking up everyday starting with a setback.
PERSON 1: Like I have a slow processing speed.
PERSON 2: Paranoia, fatigue, irritability, mood swings, sadness, nervousness, all pretty much describe it.
PERSON 7: A difficult, stressful, constant worry, bipolar, and depression.
PERSON 6: It makes me feel obsessed with weight and food. It results in perfectionism, body dysmorphia, and guilt.
PERSON 5: It is very complicated and frustrating and you can really develop a lot of anxiety.
[The screen goes black, and white text appears that says, “How does your disability make you a better person?”]
PERSON 1: My disability makes me a better person because I am able to be more understanding to the people around me.
PERSON 8: In an ironic way, I am almost grateful for it because it has prepared me, trained me, made me wiser.
PERSON 3: I believe that humans are a sum of all their past experiences and so by incorporating my hardships into my own narrative, I think it has made me a stronger person.
PERSON 4: So, when I was younger, I was diagnosed with ADHD, even though I didn’t actually have it. But I am glad that I was diagnosed with it because I am not educated about how people feel and how people are treated, especially when they are diagnosed with that. So, I have, like, a little bit more empathy for those people.
[The screen goes black, and white text appears that says, “What Can You Do?”]
PERSON 8: These all often lead people to separate themselves from their peers and hide their true form from their group.
PERSON 5: We are more than our disabilities, thus we have our strengths and powers.
PERSON 2: You can help people out by giving them opportunities to be themselves and showing you care.
PERSON 4: So take a moment to post this on your social media with the hashtag #InvisiblePowers to alleviate the stigma and let others know it is ok to have challenges.
PERSON 3: And I wouldn’t even describe it as a disability. I would call it a strength. Something that has taught me a lot in my life. And even though for a period of time it separated me from my friends and family, after learning how to get back up on my feet, like, I am closer with my family and friends than ever. So I would just take a moment to be grateful for what you have.
[The screen goes black, and white text appears that says, “Spread The Word #InvisiblePowers”]
Invisible Disabilities: Seeing Others with Compassion
[Valerie Kosson stands to the right of the stage. A marimba and music stand are set up in the middle of the stage. The audience claps before Valerie starts to speak.]
Music has always been something that made me feel alive. It made me feel like “Oh I, have a place in the world,” which is important because my world is quite different from others. I was born four months early at 23 weeks and five days.
[A picture appears on the screen of Valerie in the NICU as a baby. Her mother is watching over her. The caption says, “One month old in NICU. 1st day off the respirator. 1 lb, 4 oz.”]
My twin sister didn't survive. After heart surgery, thirteen blood transfusions, several life-threatening illnesses, and spending four months in the hospital, I managed to hold on to life by a thread and was celebrated as a true miracle baby when I came home. On my birth certificate, my weight was recorded as seventeen ounces, but I was actually 12 ounces. One does not qualify to be saved at that weight, the size and weight of a can of soda. Fortunately, there is a kind nurse in the O.R. who put her thumb on the scale. Just adding a few ounces saved my life.
I was on the news and then in New York Times. Modern medicine has come a long way over the years in helping premature-born babies like me survive. Many of us micro-preemies are now in our 20s and are faced with challenges that are quite unusual.
One of the challenges is that I have missing parts I am missing hunger signals, the ability to feel time passing, short-term memory function, and more. In fact, I never had a single stomach ache because I'm missing nerve endings in my stomach. What comes automatically to my friends doesn't really come automatically to me because I have a traumatic brain injury.
[A picture of seven Post-It Notes on Valerie’s mirror appears on the screen. They say things like “In the mornings…make bed, shower, fix hair” and “In the evenings…wash face, use mask, brush teeth, bath.”]
I need to place Post-It notes around me so when I wake up, I know what I have to do, like brush my teeth and get dressed and wash my face. I live completely in the present and that is because I don't feel time the way that you do. I move and I act slower than everyone else. For example, I can't tell if I've been in the shower for ten minutes or 20 minutes without using my alarms from my phone.
And those are just the big challenges. I mix up words that leave my classmates laughing and confuse my professors. Someone in class mentioned the veterans and I thought they meant the veterinarians. Those are two different things. That was years ago. Adults are really good with clarifying and noticing if I don't understand something.
My entire life has been pretty lonely because my peers haven’t been tolerant. They would laugh, they laughed at me, dismissed me, rolled their eyes, and they didn't include me in their groups. I was the girl that no one picked to be their partner for a class project, and was the last for any team.
When someone takes some time to know me and see past what others called disabilities, I feel alive. And they learned to live in the moment a bit better. One person who showed real compassion towards me is my elementary school percussion teacher, Mr. McGarvey.
[Three pictures are displayed on the screen. The first is a picture of Valerie playing the drums with the caption “trying out the drums – age 5.” The second is Valerie talking to Mr. McGarvey with the caption “1st marimba recital – getting a pep talk – 5th grade.” The third is Valerie and Mr. McGarvey standing together with the caption “with Mr. McGarvey after a high school Indoor Drumline show.”]
He saw that I was interested in playing marimba when I was 11. He was patient and kind and he didn't seem to mind to translate his meanings and rephrase directions for me. When he saw me, like, swing my arms around all lesson like this, you know, [she swings her arms back and forth], he didn't laugh at me, he realized that he told me his instructions the wrong way, which is to “swing the beat.” I thought he meant that I was supposed to swing my body around while playing; he meant that I should play the piece with a jazzy rhythm, you know? And we both had a good laugh together. As a result, eventually I was winning solo competitions and was accepted into the Raiders Drum and Bugle Corps.
Another person who shows compassion towards me is my best friend and roommate, Chloe.
[A picture of Valerie and Chloe appears on the screen with the caption “with my roommate, Chloe.”]
We met while we were getting a tour on campus as high school students. It wasn't until a few years later that we became best friends and roommates. Chloe always takes the time to hear me and understand me, and I do the exact same thing for her. As a result, we have a strong bond and lots of fun.
Despite the struggles I faced over the years I know there are other people who were born prematurely in the 90s and early 2000s who are facing the same problems. Neonatologists typically follow up on children born prematurely until they are three years old, but there are many issues that commonly rise after age 3 and continue well into adulthood. Many people born prematurely have common conditions that range from social anxiety disorders, issues with circadian rhythms (perhaps because the lights were on 24/7 in the NICU), learning disabilities, poor standardized testing, and mental exhaustion.
Doctors and educational institutions desperately need to have a better understanding and insights into the lives of people born prematurely because our brains are different. There are more more of us entering into adulthood. Standardized testing given for college entry like the SATs and ACTs determines how well a student is memorizing the material. However, they do not measure resiliency, determination, kindness, personality, musical ability, loyalty, the ability to be a good friend and listener, and more. These qualities are what make me a good college student and a good person in general. Fortunately, the admissions staff at Lebanon Valley College were able to see me pass my test scores.
[An image appears on the screen. On the left is a wheelchair symbol, with an arrow pointing to it and text saying “Not all disabilities look like this.” On the right is a symbol of a person standing up, with an arrow pointing to it and text saying, “Some look like this.”]
How do you know if someone was born prematurely and has invisible disabilities? You don’t. That's why it's important that we have compassion and understanding towards others when we get frustrated with them. How about when you don't connect with someone right away, you give it another try? How about you give more of yourself than what you're used to? How about you sit next to that kid in the cafeteria who's alone? How about finding someone you can use your help, like Mr. McGarvey and Chloe? How about when you don't connect with someone right away, you don't walk away but you lean in a little closer?
The reality is if you live long enough, eventually you will experience some kind of disability of your own. You might as well start rising above and start practicing compassion now.
Music has always been something that made me feel alive and, like I said, made me feel like I had a place in the world, which is important because my world was quite different from others’. And music also helps me express myself and connect to others, and today I’d like to share this connection with you by playing Evelyn Glennie’s “A Little Prayer,” which I hope you find calming and relaxing as I do.
[Valerie walks over to the marimba in the center of the stage and starts to play the song. The audience applauds at the end of the song.]
Service Dogs and Invisible Disabilities
This is Makayla.
[An image of a young girl appears on the screen.]
One night when Makayla was six years old, she had a seizure that was so terrible she nearly died. No one was there to help, and it was a very, very close call. Makayla has a condition that causes her seizures to only occur when she's asleep. As you can imagine, this makes managing her safety incredibly difficult. Ever since that night, Makayla's parents have been too scared to ever let her sleep alone.
However, Makayla is 12 years old now and as any 12-year-old will enthusiastically tell you, Makayla needs her independence. Over the years, medications have helped to reduce Makayla’s seizures, but they've never eliminated them completely, and no monitoring system has ever proved effective enough to discern Makayla’s seizures from her normal sleeping, tossing and turning, dreaming self…until Ferris, her medical alert service dog.
[A home video plays on the screen, in which Makayla is in her bedroom. She says “Ferris, it’s time for bed!” and the dog closes the door and turns off the light before jumping into bed with Makayla.]
This is Makayla’s new nighttime routine. As you can see, a lot has changed for Makayla. This is a K-9 phone.
[A picture of a small black device with a white button appears on the screen.]
It is designed to call any number that is programmed when the button is pushed. Once the button is pushed, it will call that number and then play whatever message is pre-recorded on the device. The organization I run, Diggity Dog Service Dogs, trained Ferris, Makayla’s service dog, to use the K-9 alert button to call for help whenever Makayla had a seizure. You can see what this looks like in the following video that is of the first time that Makayla met Ferris and was testing his response. If you watch closely, she will be mimicking the behaviors that she often has during the seizure. She will pretend to sleep for a few minutes, and then you will see her subtly begin to shake. At that point you'll see Ferris respond.
[A video plays of Makayla and Ferris laying on a bed together. Makayla has her eyes closed and she is pretending to sleep. A few seconds into the video, Makayla starts to shake, and Ferris jumps out of bed and runs to the K-9 alert button. Ferris pushes the K-9 alert button with his nose. Makayla sits up and praises Ferris.]
As you can imagine, this was a game changer for Makayla and her family.
When most people hear the term “service dog,” they picture seeing-eye dogs for individuals that are blind. Seeing-eye dogs, also called guide dogs, are the oldest form of service dogs, and they began being produced in the 1920s. It would take nearly 30 years until other types of service dogs began to emerge in the form of hearing assistance dogs. These dogs would alert people to things like smoke detectors going off or someone knocking at the door. Mobility assistance dogs would follow soon after, and they are truly amazing. They do incredible things. Let's watch a few examples of our dogs in training.
[A video plays of a person looking for their keys. She says to her service dog, “Find my keys?” The dog stands up and looks around the room until he finds the keys on a chair across the room.]
They can do things such as find your keys. Retrieve items from the fridge.
[A video plays of a dog opening a refrigerator by pulling on a rope that is tied to the door handle. The dog pulls a water bottle out of the fridge, closes the fridge door, and brings the bottle to someone standing in the next room.]
Find your phone.
[A video plays of a saying to their service dog, “Find my phone?” The dog stands up and looks around the room until he finds the phone on a chair across the room.]
Turn lights on and off.
[A video plays of someone telling their service dog, “Go get the lights!” The dog runs up a flight of stairs and turns off the light switch at the top of the stairs, then comes back downstairs. The owner says, “Good girl!”]
Help you get undressed.
[A video plays of a girl sitting on the couch while wearing shoes. She holds out one foot and says “Shoe!” Her service dog pulls the shoe off with his mouth and gives the shoe back to her. They repeat the process with the other shoe. Then the girl says “Sock!” and the dog pulls her sock off her foot and gives it back to her. They do the same thing with the second sock.]
Or retrieve various items upon request.
[Two photos appear on the screen. One portrays a dog with a piece of mail in its mouth, and the other has the dog holding a remote control in its mouth.]
These days, service dogs are doing more than ever before. They are doing things like monitoring the blood sugar levels of people with diabetes, and assisting with individuals that have autism and PTSD. For most of our clients with psychiatric service dogs, medication and therapy plays an important role in their recovery or treatment. However, our service dogs do things that neither of those things can.
They do things like interrupting self-destructive behaviors such as scratching, cutting, hair-pulling, or nail-biting. Let’s watch this video that shows one of our dogs persistently interrupting somebody biting their nails until they stop.
[A video plays of a young woman sitting at a desk. Her service dog is laying next to her leg. The woman starts to bite her nails, and the dog nudges her leg with his nose until she stops. Once she stops biting her nails, she leans down to pet the dog and praise him.]
The dog’s alert to these behaviors that, most of the time, the clients do not realize they are doing. And if these behaviors were and they were allowed to persist, they would often escalate into full-blown panic attacks or sensory overload meltdowns, where the individual actually loses control of their well-being. By interrupting and alerting to such behaviors, the dogs enable the individuals to use touching the dogs as a means of grounding themselves in the moment, or as a prompt to use other coping mechanisms that may be at their disposal. Those can be things like medication or taking a moment to practice breathing techniques. Let's take a moment and look at what this would actually look like.
[A video plays of a man sitting on the floor with his head in between his knees, rocking back and forth. His service dog comes over and rests his head on his arm. The man looks up at the dog, who licks his face, and the man puts his legs down to let the dog lay down on his lap.]
What you see here is actually a behavior we call visit. This is actually called deep pressure therapy, also sometimes called DPT. And what deep pressure therapy is is the process of applying pressure to the body in order to relax the nervous system. What happens when you apply deep pressure to the body is you actually switch from the sympathetic nervous system to the parasympathetic nervous system. You actually switch from fight-or-flight mode into rest and digest mode. This physiological response is exactly why swaddling a baby often causes them to stop crying. It's also why they give trauma patients weighted blankets, or why thunder shirts work for dogs, which some of you may be familiar with.
Psychiatric service dogs help in other ways too. They are there to extend people's personal space in public, just that extra foot or two that can able them to cope in crowded places. For a lot of people that extra foot or two can be the difference between them being able to manage themselves in a certain situation or not. They are also there to do things like wake people from nightmares, which no medication or therapy can do. For others, they are there to remind them to take their medications, medications that are often essential for their stability. Additionally, the dogs often remind people of erratic behaviors, behaviors that are sometimes difficult for them to hear about from their loved ones. Yet from the dogs, it's neutral, they're able to hear it.
I'd like to introduce you to a client of ours named Jason. Jason was a productive member of society. He's the father of a young girl, a working surgical nurse technician, until he experienced a trauma that was so severe it left him terrified and isolated.
[A video plays where Jason and his service dog, Harper, are sitting outside together. He says, “Before Harper came into my life, I was so terrified of people and the outside world that I couldn't leave my basement, and I had not left the house for a year and a half before I got Harper. My inability to be around a lot of people, I was left with very few options of what to do, and when it was suggested to me that a service dog might be a good idea, it opened up a whole new thing in my mind. That I could actually get help and feel better without having to deal with other people. So it gave me a different avenue than just medicating myself to the point where I was not there anymore. I don't know where I'd be without him.” As he is speaking, the video shows various clips of Jason interacting with Harper.]
Amazingly, as Jason said, when he came to us to receive his service dog, Harper, he hadn't left his home alone in over a year and a half. Less than two weeks later, he took his daughter to Disneyworld, with Harper of course, and in fact, they had such a good time they now go back every single year.
This is an exciting time to be involved with service dogs. We are finding more and more ways to help people. We are finding an increasing number of conditions that we are able to train the dogs to help with. We are able to prevent repeated institutionalizations. We're able to decrease people's dependency on pharmaceuticals. And we are able to decrease people's dependency on others. We are able to really actually give them a sense of independence. And we are actually saving lives with dogs like Ferris and his friends.
Some of you may have noticed an increase in the number of service dogs that you have encountered in recent years. There's good reason for this. Service dogs have a more diverse role in our lives than they ever have before. It's difficult not to be curious when you encounter someone in public that is not visibly disabled, and yet has a service dog. However, hopefully now you will be able to understand some of the tasks that these dogs perform, and why is it so essential that this these dogs remain focused when they are working in public situations.
Training service dogs is an incredibly costly and time-consuming endeavor. Tt means that the organizations that do produce them have had to be incredibly ingenious in the ways that they produce them. Some organizations have partnered with prisons and trained the prisoners to train the service dogs. Our organization has partnered with University of Massachusetts Amherst, and the students are able to get credit for fostering and training our service dogs. Please allow me now to introduce a few of our service dogs in-training.
[Six people step out on stage, each one accompanied by a service dog in training.]
These students have decided to take on the colossal challenge of deciding to train a service dog during their college years. I cannot emphasize enough exactly the effort that this takes. It requires an incredible amount of time management, an incredible amount of patience, absolute consistency, and an utterly absurd amount of time. However, the dogs that they train go on to change other people's lives forever, and I believe the students that choose to do it, their lives are changed forever as well. It's our hope that through this talk, you will understand a little-known, yet very powerful treatment option that is available to people, and understand a little bit more about how to interact appropriately with service dogs that you encounter in public. Thank you so much.
[At the video starts, the camera pans down until you see a woman standing in front of the IWK hospital. She is wearing sunglasses and a black coat.]
When you look at me, there are so much that you don't see. I was born 17 weeks early and weighed 1.5 pounds.
[The camera zooms in on the woman and she holds up a photo of herself as a newborn baby. She is in an incubator at the hospital, with tubes attached to her. As she continues to speak, more photos of her appear on the screen. She is a little bit older in each photo.]
I started school at age 6, weighing 20 pounds, and was in and out of the IWK for the first 10 years of my life.
[The woman is now standing in the middle of a crowded street with people walking all around her. She is looking directly at the camera.]
You don't see that I have a learning disability and short-term memory issues. I was bullied in public school, depressed and hurting. The world seemed to pass me by. I felt invisible. So, when you look at me, what do you see?
[She is now standing in an office hallway. She is wearing regular glasses and a yellow sweater. A woman passes by her, patting her on the shoulder as she walks by. Another woman walks by her from the opposite direction, giving her a high-five. A couple more people walk by her, and she smiles at them.]
You see someone who realizes they learn differently, and I am smart. Someone who put in the hours to study, who asks for help, graduated college, and now has a great career with the Province of Nova Scotia. You see someone with support and guidance who now has a voice. Someone with the help of networks, both professionally and personally.
[The woman is now standing in front of a blue wall, with a large group of people standing behind her. Everyone is smiling.]
You see someone who helps others and feels part of a team. Someone who has overcome challenges and persevered. You see me. Like Winston Churchill said, “Difficulties mastered are opportunities won.” I'm Breagh Maclean, I work for Service Nova Scotia in Internal Services, and I have an invisible disability.