Empowering Ability Podcast

#062: Joe Clayton's Story Institutionalization and Building His Life Afterward

Lorna Sullivan, a global disability leader who is making significant changes inside the New Zealand social system. Lorna is the founder of the International Initiative for Disability Leadership (IIDL) and Director of Mana Whaikaha. I had the pleasure of learning from Lorna when she was part of the faculty in Michael Kendrick's Optimal Individualized Service Design Course.    In this podcast, we cover a wide range of topics, including:  doing away with deficit-based assessments,  enhancing a person's mana (explanation inside the podcast),  the power of holding a positive vision,  the rights of people with disabilities, tools for social inclusion,  and much more!     About Lorna Sullivan: Lorna became involved in being an advocate for people with disabilities by accident. She began her study in the field of Psychology, where she was first exposed to people with disabilities who she didn't know existed because they were hidden from the rest of society.    Lorna realized the damage that is done when a group of people, through no fault of their own, are marginalized from the rest of society and have no mechanism to find their way back.   Lorna shares, "If we continue to view disabled people as human tragedy and the best we can do for these people is to care for them; we will continue to deny them every aspect of life that we hold to be valuable."    Lorna helps us understand people with disabilities are the same as every other person, the same human needs, aspirations, and desires. She is on a mission to include people in all areas of society.     Lorna on Inclusion    Paraphrasing from the podcast, Lorna shares:   There is a fear of rejection, and in many cases, actual rejection is true.   My experience has been society wants to engage with people that have disabilities, but they don't know how to. We need to give them [people] the tools to do that [engage].    The best tool that we have to create more inclusion in society is to keep people close. If a person with disabilities is with other valued people in the Community, it makes it easier for other valued people to communicate with a person with disabilities. It normalizes the person.     Tweetable Quotes from Lorna:   "Never resort to the special, unless you have exhausted the ordinary. If we start in the special, we will always end in the special."   "The only thing that will change the trajectory of the lives of people with disabilities is where you have strong families, with strong vision - you have competent disabled people. Where you don't irrespective of the capacity of that person, you have dependency."   "Holding a very strong vision for a positive, meaningful, and full life isn't a trivial thing. If you don't hold this vision through the hard times, you will get blown anyway the wind is blowing."   This podcast with Lorna Sullivan is jam-packed with wisdom and is a must listen!   Also, if you like ideas discussed in this podcast, you are going to love the upcoming FREE Masterclass Workshop Series that guides families to build a strong vision for a positive, meaningful and full life that Lorna was talking about! Click Here to Sign up for free.     Love & Respect, Eric       Resources: Mana Whaikaha website: https://manawhaikaha.co.nz/   The International Initiative for Disability Leadership (IIDL) website: http://www.iimhl.com/iidl-homepage.html

#061: The Power Of Positive Vision, with Lorna Sullivan

Separated from her brother at childhood, Libby shares her journey of supporting her brother to create a great life.    Enjoy this conversation with Libby Ellis, sibling, and founder of In Charge, a consulting organization in western Australia that is assisting people with disabilities to be the authors and champions of their own lives.   About Libby Ellis: Libby works for a vivid vision of inclusion. She has walked many steps with her brother, Matthew, and for 20 years she has assisted others in taking front stage in their own lives. She supports people through the experiences, lessons, successes, and failures in self-direction over an extended period. Libby’s vision is to bring a personalized, heart understanding of what it takes to be in charge. Libby lives in Sydney, Australia with her husband, Sebastian.   Libby’s Story: On the podcast, Libby shares her family experience. This blog captures a summary of her story; I recommend that you listen to the podcast to get the full version! Libby lives in Sydney, Australia and has two brothers. A younger brother James and older brother Mathew (who has a disability). She is married to Sebastian (who is Canadian). Matthew moved out of the family home when he was just nine years old. He moved into a medium-sized institution, where about 15 other people lived. Later on, the institution got broken up into smaller group homes. When her parents asked for help, that was the solution. For many families, this is still the proposed solution. Libby started to realize these injustices that Mathew was faced with when she was in her mid to late teens. Matthew’s experience was a trigger for her rights based / social justice thinking. Libby was transformed through love and witnessing Matthews experiences in a disabled world. She saw his pain, vulnerability, powerlessness, and lack of control. Libby’s family helped Matthew move out of the group home when he was 26. Her childhood experience was one of separation from her brother and trying to understand why it had to be that way.   How did the separation from your brother impact you? Libby: “I started to ask why? It has led me on my path, and in my career to date. It has taken me to a lot of lessons and experiences that I have experienced over the last 25 years of my career.”   Can you share Matthew’s experience of separation? Paraphrasing from the podcast, Libby shares: “Matthew doesn’t speak and hasn’t yet been able to share his experience. He can understand, but he is missing expressive language to share his thoughts and his feelings. From my perspective, he experienced some not very nice things. He has some behaviors that developed as coping mechanisms. When I look at pictures of him from that time vs. images of him now, there is such a difference, and it isn’t a difference of age. I can see the impact of the disabling environment that he was in.”   How did you make the move out of the group home? Paraphrasing from the podcast, Libby shares: “Because he couldn’t articulate his experience himself, we had to come up with a decision-making process and take a leap of faith to help him move out of the group home. Meeting with other peers and people that have gone before you, then you can see the thing that you want because someone else has created it and is living it. You can then see the pathway forward – this is so important. You can see the evidence, or indicators, to a good life, that is there in other people’s lives, but they aren’t there in your family; this can help to take that leap of faith.”   How did you breaking through communication and behavioral barriers? Paraphrasing from the podcast, Libby shares: This is an ongoing challenge. We had the questions: Who is going to want to live with Matthew? Who is going to want to care for him? It is what I call the “what ifs..” It is helpful to list out the ‘What If’s…” What if… Someone does something to him..What if… He loses the key…What if… xyz… This then becomes the basis for the safeguarding system we built. We need to step into the unknown, but before that, there is a lot of planning and preparing. By trusting and having a sound safeguarding system in place, we have found people, and people are out there. Sometimes it takes a while to find the right person.” Eric shares, “ It is a myth that people that have a disability have to live with other people that have disabilities.” Libby shares, “It is hard work. The social model of disability teaches us that it is going to be hard work. But, it was also hard work when Matthew was in institutional settings. In institutional settings, it was hard work to make a change because of the powerlessness [against the organization]. Now it [the social model] is hard work, just a different kind of hard work. For example, finding someone to live with Matthew. But now we have control and power.”   What are some of the other key lessons you learned? Paraphrasing from the podcast, Libby shares: “We are not automatically an advocate. Families are blocked by low expectations, not having a sense of what is possible, past negative experiences. We are often making choices within very narrow perspectives. Also, there is a difference in advocating for ourselves and others. Families need to be careful about what we ask for and what we create. The history of what has been created by families includes many of the services that have been started, and there is a pattern of segregation as a result.” Eric: As families, it is our responsibility to educate ourselves. Take workshops, connect with thought leaders, listen to podcasts, and connect with families leading the inclusion movement. One step you can take is to take the FREE Empowering Ability Mini-Course. To learn more click here. Libby and I also discuss the topics of life being more than a service, the impact of agency, family constellations (psychotherapist, Bert Hellinger), and tipple win thinking. You can hear all of these insights by clicking play on the podcast player below!   I express my sincere gratitude to Libby for coming on the podcast and sharing her story and wisdom!   Love & Respect, Eric   Resources: Libby’s Website: Incharge.net.auEmail: Hello@Incharge.net.auConnect with Libby on linkedIn https://www.linkedin.com/in/chargeaustralia/

Taking Charge of Life, with Libby Ellis

 In this conversation with Dr. Margaret Newbury Jones, here out referred to as Margaret, of SHADE Consulting and Counselling we dive into the topic of sexuality and disability. We discuss what self-advocates, families, and supporters need to know about sexuality and Intellectual/developmental disability (IDD). She answers the questions; Why is knowing the language of our bodies so important? Where do I go to find a partner?, What is the role of a paid supporter, and Should we be allowed to have sex and watch porn in the group home?. Margaret’s career has focused on working with folks of all ages with intellectual and developmental disabilities (IDD) and other disabilities for 25+ years. She worked as a public-school special educator for 15 years before beginning to work as a consultant and counsellor focusing on trauma, sexual health and folks with IDD. She works directly with clients with IDD as well as their families and supporters and is known for providing engaging workshops for families, self-advocates, front line workers, and other professionals. She is most importantly a family member of a sibling with IDD, her best teacher.   Why is it so important for us to talk about sexuality for people with an intellectual or developmental disability (IDD)? Margaret: “Everyone is a sexual being; it doesn’t matter if you have a disability or not.” Eric: Other than sexually transmitted infections (STIs), pregnancy, general health are there other reasons we need to be talking about sexuality for people that have an IDD? Paraphrasing from the podcast, Margaret shares; “Safety. People with IDDs are much more vulnerable to being abused and taken advantage of. Also, a lot of it is about autonomy and making informed decisions and not feeling like someone else gets to make those choices for you. We don’t have to allow others to make those decisions, that is a person’s right [to make those decisions] when they are an adult.   In terms of statistics, now big of a problem is sexual abuse? Paraphrasing from the podcast, Margaret shares, “There aren’t any good solid stats – the research you referenced is from the 80s and 90s. [Eric referenced stat – 83% of women, 35% of men with IDD are sexually abused] The stats can vary from 2 percent to 60 percent. But what we do know, is that rates of sexual abuse for people with IDDs higher than the general population. Also, just like the general population, people with IDDs don’t report, don’t know how to report, [or don’t have the language to know they were sexually abused as we discuss below].”   What do self-advocates need to know about sexual health? Paraphrasing from the podcast, Margaret shares: “Language – if folks don’t have the right language to tell us that something happened, how can they tell us? If you don’t know the language of your body, how can you tell somebody when something goes wrong?” Margaret shares a story sex educator Meg Hickling’shttps://www.amazon.ca/Books-Meg-Hickling/s?rh=n%3A916520%2Cp_27%3AMeg+Hickling work where Meg was going into prisons and working with inmates and teaching them sexual health. When she had the opportunity, she spoke to sex offenders and asked them how they looked for their victims. The sex offenders told her that they look for people that don’t have the right language for their bodies. They said to her that if they do have the right language, they are more likely to tell. If they don’t have the language, they are less likely to tell because they aren’t having those conversations. We also go deeper into the topic of consent on the podcast. Margaret also shares that it is important that people that have an IDD know the basics of sexuality, sexual health, healthy relationships. On the podcast, she answers one of the most common questions she is asked by her clients with an IDD, “Where do you meet or find a partner?”   What do families need to know about sexual health? Paraphrasing from the podcast, Margaret shares; 1) Make sure they have the language of their body. 2) Role of a supporter is a bridge to relationships, not to be the relationship. 3) As families, we need to let the person grow up and not be a perpetual child. If you are 50, you still have 50 years of life experience. 4) Recognize that puberty can be one of the most normalizing things that has or will happen to a person with an IDD. What comes up in your work around menstruation? Paraphrasing from the podcast, Margaret shares; People are put on birth control to manage menstrual periods because families and caregivers feel like it is challenging to manage menstruation. We can teach menstrual management. Families will also say that the person is protected if someone abuses them. Margaret’s response is, “Does that make abuse okay?” We should be keeping them safe from the get-go. We also discuss the issue of consent and menstrual management on the podcast. Margaret shares, “We tend to do things that are timely. We don’t take the time to make sure that people fully understand, fully consent, and fully process what is going on.”   What do supporters and organizations need to know about sexual health? Paraphrasing from the podcast, Margaret shares; 1) Define the role of the supporter as a bridge to a relationship, not being the relationship. 2) Organizations need to have a sexual health policy. Everything is then dealt with similarly, and it addresses the individual sets of values that people delivering the support have. 3) Supporters need to be aware of their own beliefs and values. We also get into interesting questions of: Should people with disabilities be able to have sex in the group home? Should people with disabilities be able to watch porn? To hear these answers, you need to listen to the podcast! I thank Margaret for the engaging conversation and for sharing her wealth of knowledge on sexual health. Margaret has also provided us with a library of resources on sexuality and disability below. Love & Respect, Eric   Resources: Sunny Hill Education Resource Centre (SHERC) – This is a lending library with many sexual health-related materials. Email: sherc@cw.bc.ca Website: www.bcchildrens.ca/sherc Sexuality Education for People with Developmental Disabilities (2018) – Elevatus Training – www.elevatustraining.com Life Cycle – How We Grow and Change: A Human Development and Sexuality Education Curriculum. Varicheck, S.M. & Tolle, R.K. (2008). Life Cycle Education Consultants. www.lifecycleeducation.com www.real-talk.org   Websites (these are a combination of safe sexuality websites as well as websites addressing trauma/self-regulation): www.beaconhouse.org.uk www.safehandsthinkingminds.co.uk www.self-reg.ca www.northstarpaths.com www.booksbeyondwords.co.uk www.tascalberta.com www.teachingsexualhealth.ca www.safehealthschools.org www.urbandictionary.com www.pflagcanada.ca www.advocatesforyouth.org www.sexualityandu.ca www.planetahead.ca www.plannedparenthood.org/info-for-teens www.wontgetweird.com www.teenhealthsource.com www.goaskalice.columbia.edu www.teengrowth.com     Books Asperger’s Syndrome and Sexuality: From Adolescence through Adulthood – Henault, I (2006). Jessica Kingsley Publisher Autism-Asperger’s and Sexuality – Puberty and Beyond – Newport, J & Newport, M. (2002). Future Horizons Boys, Girls, and Body Science – Hickling, M. Harbour Publishing A Five is Against the Law! Social Boundaries: Stright UP! An Honest Guide for Teen and Young Adults – Dunn Buron, K. (2007). Autism Asperger Publishing Co. It’s Perfectly Normal: A Book About Changing Bodies, Growing UP, Sex and Sexual Health – Harri, R. (1994). Candlewick Press Protocol for Personal Care (Adult or child) – Available at Community Options http://communityoptions.bc.ca/about-us/protocol-books/ Sex, Sexuality and the Autism Spectrum – Lawson, W. (2005). Jessica Kingsley Publishers   Dr. Margaret Newbury Jones Contact Information www.shadeconsulting.ca 778-215-0132 info@shadeconsulting.ca 

Sexuality and Disability, with Dr. Margaret Newbury Jones

 It has been a little over one year since my sister, Sarah has come onto the podcast – and a lot has changed for Sarah. The most significant change has been Sarah moving out of mom and dad’s and into a home of her own. This single decision to move out of mom and dad’s made 1000 decisions for Sarah and our family. This one decision for Sarah to have a home of her own has allowed her to grow into the capable young woman that she wants to be.   Before the Move On the podcast, Sarah shares her journey starting from leaving the school system and spending the better part of a decade living in our parent’s basement. Sarah shares, “Mom and Dad did everything for me. I had no choice [living in their home].” Our parents (and me) made decisions and did everything for Sarah - we acted out of love and with the best intentions… BUT, this created the institution of home. I’ve realized a person doesn't have to live in an institution or a group home to have choice and control stripped away. Eventually, Sarah pushed hard to have her voice heard, which created a lot of conflict and tension in our family. It caused enough pain and pressure for our family to finally act instead of continuing to live our lives by default. We had a lot of conversations as a family and engaged with a facilitator to help moderate the discussion and plan an optimal path forward. Sarah wants a place of her own; however, mom and dad thought it was too big of a jump. So, we all agreed on the interim step of Sarah and me living together for two years.   The Experience of Moving out and Mom and Dad’s July 2018, Sarah moved out of mom and Dad’s place and in with me (her brother). On the podcast, Sarah shares how the move out of mom and dad’s house gave her the change of environment needed to open the door for her to develop valued roles of; contributing adult, roommate, and daughter. She also shares the ups and downs she has experienced in her new home when it comes to: Decision making: significant increases in choice and control Supporters: building and managing her support team (in replacement of mom’s caregiving) Opportunity to do everyday things: meals, laundry, cleaning, etc. Dealing with overwhelm. Breaking down co-dependency: shifting the relationship with mom from caregiver to mother. *Take a listen to the podcast to hear these insights.   What was helpful for you in making this change? Sarah discusses the three things that were most helpful for her: My support circle; helped to make decisions, to provide new ideas and perspectives, and to provide social and emotional support. Talking through challenges to process how she was feeling. Meditation. Take a listen to this podcast to get Sarah’s perspective and the wisdom she has to offer you! 

#058: What I learned Moving Out of Mom and Dad’s

... If I am not there to care and look out for my son or daughter, then who will be? It is a big question, but it is also something we avoid talking about because we have to realize our own death. BUT, if we don't have these conversations - what are we leaving behind?! From the hundreds of families I have spoken with I've learned that it is a massive hole. If you are the go-to person for your loved one with a disability, and they are dependent on you and you aren't there for them anymore it is impossible for one person to step into your old shoes. It causes a ton of stress, anxiety, and disrupts several people's lives. This is why we need to think about the relationships in our loved one's life, this is why we need to be intentional about a Personal Support Network. In this video, I show you how to do this.CLICK HERE to learn how.  Enjoy, Eric   PS. Having a strong Personal Support Network for your loved one with a disability is the best way I've found to support someone after their parents can no longer care. BUT - a Personal Support Network is more than that, it will provide in ways that you could have never imagined in the short term. CLICK HERE to learn how!

Bonus: If we aren't there for our loved one with a disability, who will be?

Over the past few years, I’ve been thinking deeply about how to best support families with a loved one with a disability to create a happy and full life for their loved one - and a good life that isn’t dependent on parents (forever)… I know this is possible because I have friends with disabilities who have created this life - my family is going through this transformation, and the families I work with are going through this transformation. In this video, I share one of their stories with you.  ... and I've found that there is there is ONE key thing in common for all of these families… They have Created a Vision! As families, we need to be able to imagine the best possible life for our loved one with a disability so that we can then create it.  Well, actually there are TWO things all of these families have in common. There are two paths that you can choose as a family (and neither is risk-free). In this video, I tell you about these two paths - and I share with you the ONE path that these families are choosing to create the best life possible for their loved one.

Bonus: The two things successful families are doing

As families, we have the question of who will care for our loved one with a disability when we no longer can?People with intellectual and developmental disabilities have less than 20% of the number of relationships compared to a typical person. This leads to loneliness, which is more harmful to our health than smoking a pack of cigarettes every day. In this video, I explain how to build relationships. You can create a happy and full life for your loved one with a developmental or intellectual disability - that isn't reliant on you. You can make this transformation happen for your loved one and your family. To do this... We must elevate our expectations for what is possible. Start by focusing on relationships. In this video, I also show you how to create and deepen relationships for your loved one.

Bonus: How to create and deepen relationships

How to create a life worth living? … am I implying that there are lives that aren’t worth living? This a big question that I ask you to consider for yourself.   People with developmental disabilities are devalued and suppressed (largely unconsciously) by society, our families and even ourselves (I am guilty too).   When a person is devalued, it is very difficult to access the opportunities that everyone else can access, and often results in isolation, loneliness, and suffering. Again, I ask - A life worth living?   Well, what I do know, is that I can do better, and we can do better, and our society can do better.   And, and it starts with a vision.   Why do we need vision? Well, as human beings the sense that we trust the most is our eyes, we are looking out for dangers and rewards. Also, where we look is where we go - If we are surfing and we are looking at the rocks, we will end up on the rocks, if we are looking at the beach, we will end up on the beach. Here I am talking about vision as one of our 5 human senses. However, these truths about our sense of vision apply to our future. If we can imagine, or see in our minds, where we want to be 5 years from now... we can trust that we can get there, and we move in that direction. We are looking at the destination we want to get to 5 years from now and will move in that direction, just like the surfer that looks at the beach and steps off their board into the soft sand (instead of crying out for help to be saved while being pushed upon the jagged rocks).     In this conversation with Michael Kendrick, we discuss 'Imagining Better" and we attempt to answer; What is vision? Why is vision so important for people with IDDs? and, How do you go about creating a Vision?     Michael Kendrick PhD. is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe. His work has involved training, evaluations, strategic planning, critical problem solving and confidential advice in the areas of mental health, disability and aging with an emphasis on persons requiring long term support.   What is Vision (the future looking kind)?   MK: "It is the way we see the world. It differs from one person to another. It is possible for people to have different content in their vision. We might have no vision on some subjects because we have never seen them before, where other areas we might have detailed visions. Vision might change over time - our life experiences shift our vision.   For example, the decision to see the good in people would be a way to approach people as if there is good in people. If your vision is that people are nasty or unpleasant, then the way you will see people are nasty because that is what you are looking for."       Why is it important for an individual with a Developmental Disability to have a vision?   MK: "A vision with opportunities can create life-giving possibilities. Without that there can be no sense that these possibilities exist. [For example] A lot of people with disabilities were raised with the belief that work and employment would not be a part of their future. This persuades people through conditioning and reinforcements [what they will not work] through other people’s world views. This might mean that people have many undeveloped, unrecognized potentials and capacities that are never explored because of the limited vision for them and also the conviction that they don’t exist."   EG: If you don’t have a plan, you are part of someone else’s plan, and their plan might not be that good for you.     Society's Collective Vision:   MK: "There is also a collective vision for society, such as the indigenous people in Canada is one that is devaluing. All societies tend to produce devalued groups at the margins. People might not be conscious of it at the surface."     People with DDs are devalued by society. How do you break free of societal devaluation?   MK: "A disability is seen as a negative feature of a person, people then generalize from the disability to the person entirely. You are no longer a full human being, you are a human being that is lacking. If you wanted to change that, then you would have to say that your disability need not impact the fullness of your life potentials.   With the person-centered movement – it is the person that matters, not the disability. It starts with what is the fullness of this person’s humanity and how can this be realized. The person is seen as full of potentials, notwithstanding that they live with some sort of impairment.   Be honest and accurate about the disability, but not giving it more emphasis than its needs. Living with the impairment in a practical way."       How do we go about creating a vision?   MK: "People with developmental disabilities are much more likely to be in segregated settings.   We can ask, What would be the inclusive or socially integrated option, vs the segregated option?   Families have been schooled for the segregated option. Need to ask the question, what would the inclusive option be?   There might be impediments, but that doesn’t mean the person can’t join, but we just need to figure out how to overcome it. What would support the person to be successful in that situation?   Vision can shift, and it can create new life opportunity. Vision creates realities.   From Social Role Valorization (SRV) we can look at the Culturally Valued Analog (CVA). [CVA is simply] What would a person of the same age be typically doing with their life? If you are 6 years old, would you be in school? If you are 25 years old, would you be working or furthering your studies? It helps people look at things in normative terms, which builds vision for what the person could conceivably access.   You find your place in the CVA, to do what suits you by following things you might be interested in. CVA is massive and there are so many opportunities, you just need to find what appeals to you. [You can ask] What resonates with that person’s nature?"       Where do I start when creating a vision?   MK: Always do things with others. This gives you more resources than trying to do it yourself. Not everyone is good at imagining better, you want to pick people that are imaginative. You build vision over time - revisit and refashion on an ongoing basis.     Should you discuss shared world views and values before starting the visioning process with others?   MK: "To the extent that you can do this, it is very consciousness raising. It makes us aware of values, principals and also priorities that people have. For instance, people don’t like to do things that are difficult. When you are going to break new ground, you have to open yourself up to new challenges. You have to look for people that can not only imagine better but are also interested in the doing.   [Also,] seek examples of imaging better. If someone has already achieved what you are doing, it is conceivable. For example, in the early days when we were trying to get people a home of their own, there weren’t many examples. Now there are many.   See what people have already accomplished. Stories and videos.   Join social networks that share a common interest. For example, joining a group of other progressive-minded families. It is harder to do this in isolation."   If you are looking for examples and ideas a good place to start is the Partners For Planning Learning Centre.        Michael Kendrick and I also discuss family mentorship, role modeling, life-giving vs live-denying choices, and leadership on the podcast. These are important parts of the conversation, which you can access by clicking on the player below.   In closing MK Shares (in summary):   “Vision won't prosper unless there are leaders that mobilize people around the vision. You have to have buy-in and you have to win the buy-in of others. [This is] Not just individual leadership, but collective leadership. Investments in visionary leadership are a good investment. You also need leadership renewal because it is a long journey. People need ways to become renewed and to get energy. A lot of this comes in the way of social networks. Renewal of vision is important, so you need renewal. It takes leadership to get the implementation of vision.”     If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.   The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!     Love & Respect, Eric Goll  

#057: Imagining Better, with Michael Kendrick

Here is the secret.... it is to start with developing valued roles. What is a valued role? A valued roles is the answer you give to the question 'What do you do?' when you meet someone new. [more on valued roles below] Guest Genia Sthphen also shares her story as a sibling, a mother to two sons, and how she has helped to create the good life for her son Will.   Professionally, Genia is a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. She recently launched the Good Things in Life, which is an online community for young families who share a vision of the good life for their kids with disabilities.      You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.   Growing Up With a Sibling that has a Developmental Disability (DD)   Genia is the 3rd of 4 daughters, and her younger sister Kate has a DD. Genia’s two older sisters are a fair amount older, and it was really just the two of them (Kate & Genia) when they were growing up.   Genia remembers going to appointments with Kate where they had Kate do silly things, like hold onto the pencil, and they would pull on it until she let it go. Kate didn’t care much for holding onto the pencil and as a result, was diagnosed with having poor muscle tone. But, Genia and Kate thought it was funny because Kate would drag Genia around the house on her back by her toes.    Genia recalls, “At 5 mom sat me down on her lap and told me that Kate had a disability. Mom was serious, it was an occasion, She explained Kate would learn more slowly than other kids. I responded by crying. I was trying to figure out what was expected in this situation, and it was clear to her that the appropriate response was to be sad.”   It was a big deal for Genia’s mom. She had never experienced someone with a disability, Her mom was terrified, intimidated, and overwhelmed. It was something worth crying about for her.   Genia’s mom reached out and started to connect with other parents and other people that knew more than she did. She surrounded herself with this community and exploded into a powerful advocate. She stopped delivering the information in a way that elicited sadness and started having really high expectations. She had connected with some people that had worked with Dr. Wolf Wolfensberger, who developed the social theory of Social Role Valorization (SRV).   Genia attended her first SRV workshop at 15. It taught her language, and how the world works for people that are devalued.   Key Insight: Connecting with other families is important. Not just getting connected, but who you get connected with. What are their beliefs and mindsets? How you deal with grief and fear is guided by your mindsets and fear for a person with a disability.     When Genia’s second son Will was born he was very very sick. Genia recalls, "we weren’t sure he was going to make it. They were telling the family that he would have significant disabilities." Genia’s response was “Well yeah yeah yeah, but is he going to make it, let's focus on what matters here. And he did [make it!].”     What is Social Role Valorization (SRV)?   GS: “SRV is the universal ways that people are devalued in society. Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests. People access the good things in life through the roles we play in society. It is also how we connect and understand each other. One of the first questions we ask someone is “what do you do?”. It helps us understand and relate to each other through roles.”     There is No Risk-Free Path   GS: “If your major fear is that someone is going to be hurt or rejected, and the way that you prevent that is by keeping people protected and isolated from the people that might hurt them, then that leads you down a vision that likely includes a lot of services and people paid to keep the person safe.   Alternatively, if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community.   There is no risk-free path.”     What Does The Good Life Look Like for Will?   Listen to the podcast to hear how Genia’s family has thought about the role of student for Will. Genia and her family thought through the things that were likely to increase people’s high expectation and positive image of Will in the role of student, starting from the age of 2!   GS: “Will is now 12, and we think about for his peer group what are the typical valued social roles that a person holds? And, what are the kinds of opportunities that those roles bring? Then we pursue those things.”   Want proof!?! Watch the video below.     Video: Will Enjoying The Good Things In Life   Key Insight: Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision. Additionally, the person supporting needs to understand the social role and also have the social currency to help them get there.     In this podcast, Genia and I also cover topics including raising the consciousness of devaluation in our society, the experience of being a mother with a child that has a disability, and what the experience of having a sibling with a disability.    Tweet-able Moments from the conversation with Genia Stephen:   "Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests."   "...if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community."   "Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision."         If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.   The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!     Love & Respect, Eric Goll         Resources:   Will Social Media: Theadventuresofwill.ca     The Good Things in Life --> For Parents of young children with IDDs. Goodthingsinlife.org.   Contact Genia by email: Genia@goodthingsinlife.org   Creating Valued Roles with Janet Klees: Click Here           Too Busy to listen to the podcast now? Listen on the GO!   The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!  

#056: How To Create The Good Life, with Genia Stephen

Yvonne defines grief, how to support others that are grieving, and shares her 7 takeaways to navigate through life, grief, and end of life.   In this episode of the Empowering Ability podcast, we have an in-depth conversation on grief with nurse and author, Yvonne Health. In this conversation, Yvonne defines grief, how to support others that are grieving, the difference between quality and quantity of life, and her 7 takeaways to navigate through life, grief, and end of life.  Yvonne is an inspirational Speaker, author of the book ‘Love Your Life to Death’, and a TV and Radio host.   (Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)    You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.   Why Are We Talking About Grief?   YH: “I didn’t choose this, it chose me. Looking back at a 27-year nursing career we don’t talk about grief, we don’t talk about death and dying until it arrives. Then we try and navigate through it. This causes excessive suffering. Grief is a part of our journey, but by avoiding it we are creating excessive suffering.”   Seeing this suffering as a nurse Yvonne had to do something about it, so she took a leap of faith wrote a book about it, and here we are.   As as a nurse, Yvonne became attached to people and she suffered tremendously. She realized this and she became aware of how she was suffering and became curious about it. This led her to have more conversations with other carers.   YH: “I asked fellow caregivers, are we well prepared for grief death and dying? And they said, no. Then I’d have conversations with two people with the same diagnosis of terminal cancer and their families and see drastically different experiences. One family was acknowledging and allowing all feelings - laughing and crying and being open, and being truthful about what was happening. That person died more peacefully and the family navigated through their grief and was able to get through and find happiness again. Then there were other families who were angry and bitter, and demanding more treatments and there weren’t conversations being had. There was no eye contact, I could feel the suffering. I could see this over and over, and I had this inner voice telling me we had to see something different.”     What is Grief?   YH: "Grief is whatever makes your heartache. Often it is death, but it can be divorce, a diagnosis, complications at birth, job loss, not making the team. Grief is a part of our life. Anger is often a very big part of grief, and it can come out."     How Do We Support Someone Experiencing Grief?   YH: “I [we often] don’t know what to do, I [we often] don’t know what to say. We are more comfortable avoiding people when they are grieving. But the most important thing is that we need people to just show up. A hug, a text, an email, sit in silence. Just sit with someone and acknowledge and allow their feelings and not try and fix it. You can’t fix grief, you just have to allow it. We have to get back to allowing our humanness. You are qualified to just show up.”   Quality of Life vs. Quantity of Life.   YH: “What is enough quality of life is enough for one person isn’t acceptable for another person. There is always a treatment that we can do, but the question is should we? Wouldn’t it be wonderful if we have the conversation before something happens? The time to have these conversations is not when you are facing life or death situations.”   EG: “We can create a thought experiment for ourselves and think - okay if I got cancer and I was given a prognosis of 2 years to live with intensive treatment that is going to reduce my quality of life for that time, or I could have 6 months to live with a high quality of life. Which would I choose? And, you can do this now from a rational place now, rather than a fear-based place when actually faced with the decision. This decision will likely also change over time as we age, or our life situation changes.”   YH: “These types of situations being made when things happen can fracture families, and create divides that are difficult to repair. Let’s normalize creating an end of life plan. Imagine the suffering that we can alleviate.”   EG: “Only 50% of people have a will. Get your will in order. This is especially important for a family where there is a person with a disability because any transfer of your estate to a person with a disability can drastically impact their social assistance benefits.”     Yvonne’s 7 takeaways to navigate through life, grief, and end of life   1. The Next Best Time is Now! The best time to talk about, plan and prepare for grief is when we are young and healthy.    2. It Takes a Village to support: the ill, the caregiver, the dying, the bereaved and each other.   3. When someone is grieving, Just Show Up!   4. To be empowered, resilient and compassionate, Show Up For Yourself First!   5. Structure Your Life in such a way that you are self-reliant.   6. Find your Post, and hold onto it.   7. What will Your Legacy be?   To get the summary description of Yvonne’s 7 takeaways go to http://the7takeaways.ca/ to learn more, or you can listen to us discuss these 7 takeaways on the podcast by clicking below.     Tweet-able Moments from the conversation with Yvonne:   “Love & gratitude are the answer, no matter the question.” - Yvonne's mother, Waves of healing   “Our legacy is what we create in every moment of every day. It is how we make people feel.” -Yvonne Heath   “It [life] isn’t joy or sorrow, it Is is a rollercoaster, and when we take care of each other we can get through it [life] with greater joy.” -Yvonne Heath    If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.   The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!     Love & Respect, Eric Goll       Resources:   Yvonne's Blog/ vlog   Yvonne Heath's 7 takeaways   Book: Love Your Life to Death   (Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)      Listen on the GO!   The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone! 

#055: Navigating Grief, with Yvonne Heath

Learn about the Open Future Learning training resource for supporters of people that have an IDD, & how Ben Drew is fighting the oppression of people with IDDs.   In this podcast/ blog I had a pleasure of speaking with Ben Drew, Founder of Open Future Learning. Ben has over 20 years of experience working with people with an intellectual or developmental disability starting as learning disability nurse, then going on to create an individualized housing and support service, and he is now the Founder of Open Future Learning. Ben is also an incredible storyteller and even though this podcast is lengthy, it is a pleasure to listen to.   Due to the length of the podcast, the blog is broken down into Part 1, and Part 2. In Part 1 of the blog, you will learn about the Open Future Learning training resource for supporters of people with intellectual or developmental disabilities (IDDs), and Ben's life journey to fight oppression and create ordinary incredible lives for people with intellectual or developmental disabilities. In Part 2 of the blog, you will learn about 3 foundational support principals for exceptional support. As always, all of these insights can be heard by clicking play on the podcast player below.     You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.   What is Open Future Learning?   Open Future Learning is an Online learning resource 100% dedicated to the field of intellectual or developmental disabilities (IDDs). The platform is developed for support staff, but anyone that touches the lives of people with IDD can benefit from the resource. The platform has a wide range of learning modules (for example: abuse prevention to social valued roles) which are delivered as interactive multimedia books. Open Future Learning is known for their short films and they have an on-demand video library with just over 700 short films featuring the leading global thinkers on IDD. They have also created a new product called Side-By-Side learning.    Ben explains, “ We have the saying from self-advocates, ‘Nothing about us, without us’, but we don’t live up to this. Training is one of those things. So we developed ‘side-by’side’ learning. The person that receives the support and provides the support do the learning together. They are short 30-minute interactive learning modules."   Ben continues, "Much of the content is created in collaboration with many of the leading minds in the developmental disability community. It is a really financially efficient way to get people to access these leading minds, compared to only the select few that were able to go to a conference."   The platform is designed for support organizations and priced accordingly, however, if you are an individual learner or a family and you want access to this resource you can email Ben and he will help you to access this resource. Email hello@openfuturelearning.org       Ben Drew’s Mission To Fight Oppression and Create Ordinary Lives for People with IDDs:   Paraphrasing from the podcast, Ben shares his story:   “I grew up in the UK in a small town called Devon. On the outskirts of the town, there was a small community for people with IDDs. It was kind of like Camphill without the farm. My best friend from school lived in that community, his parents managed the community. He lived in this cluster of houses where people with IDDs lived. It was great because we played football (soccer) on demand, it was mostly guys, and I got to know all of these people in the best way. When these guys came into the town the way that other people interacted with them was different. They teased them, they spoke behind their backs about them. This always sat with me and it was the starting point to wanting to work with people with disabilities. Went I was 18 years old I went to a summer camp for people with IDDs in the US, and really enjoyed it. Then came back to the UK and got a job with a guy named Gary Kent. He lived in a large residential home with 20 people with IDDs. It was a hospital that had been converted for people with IDDs to live after the institutions closed. Gary lived there as well but decided he wanted his own home. He left and purchased his own home in a nearby village. When Gary came back to the residential home he said he had to close down the residential home. He had seen the other side of life. He was learning how to cook, he was in his own community, he had control over his life and his environment - and he wanted everyone else to have that.   There was a guy that lived there [in the residential home] that was physically abusive, and there was a guy that was a runner. When the runner chose where he wanted to live, he never ran away again. The guy who was a hitter moved into a home of his own and he stopped hitting people. You can be getting really good support and if the environment isn’t right and the location isn’t right - you can only so so much.”   Insight: This was a huge lesson for Ben when he saw the change in people when they got control of their lives. These oppressive environments occur in residential homes, but they can also happen within our family homes. Speaking from personal experience, my parents home became an oppressive environment for my sister Sarah (who has an IDD) due to a lack of choice, social isolation, and lack of transportation. Most of Sarah’s decisions were made for her and most things were done for her. Of course, these things were done with the best of intentions, but this caused more stress and anxiety on everyone in the household, everyone entering the household, and suppressed opportunities for Sarah to grow. Sarah has moved out of her parents home and into a home shared with me where she now has choice and control of her life.   Ben continues with a leadership insight:   “Vulnerability of leaders is important. Gary was always incredibly transparent. He would always share his mistakes and things he had messed up. The residential home was just another thing. In order to empower everyone else underneath him, he had to be that way. The people underneath him could also make mistakes, they could also mess-up. I see cultures in organizations coming down on people. If you make a mistake it is a warning, if you make 3 mistakes you aren’t allowed to do things anymore. That culture just doesn’t work.”   Ben then when on to set up service to help 100 people with IDDs over 6 years to buy or rent their own home, manage their own supports with their own budgets, in Bristol UK, using the formula Gary gave him. Ben then moved to New York, and that is where he started Open Future Learning.   Part 2 of this blog is coming on December 18th, with insights on 3 fundamental support principals that are foundational to great support. If you want to learn about these core support principals now, you can do so by listening to the podcast.   Ben is also the creator of memes that help to nudge people in the direction of being more accepting, more inclusive, and to develop the understanding of what it is like to live with an intellectual or developmental disability. Here are a couple of my favourites:           If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.   You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!     Love & Respect, Eric Goll         Resources:   http://www.openfuturelearning.org/   https://www.youtube.com/user/OpenFutureLearning   Email: ben@openfuturelearning.org       If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes       The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!   Click Here To Listen on iTunes

#054: Ben Drew's Mission to Fight Oppression and Create Ordinary Lives for People with Intellectual or Developmental Disabilities

In this episode, you will learn all about Personal Support Networks! You might have heard of support circles, circles, microboards, or aroha's (there are probably names I'm missing), but theses are all forms of Personal Support Networks. Rebecca Pauls, Director of Planned Lifetime Advocacy Network (PLAN), shares with us with us what a Personal Support Network is, how they can benefit you, and how to go about building one.   Rebecca is the Director of Planned Lifetime Advocacy Network (PLAN), a Vancouver-based social enterprise that partners with families and people facing social isolation to secure their future by mobilizing relationships and leveraging community assets. Since joining PLAN three years ago, Rebecca has led a complete re-design of programming to integrate principles of person-centred planning, ABCD, narrative therapy, and independent facilitation. After demonstrating the strength and flexibility of this community approach, Rebecca is regularly invited to consult with organizations about how it can be scaled and applied to population groups across North America.   You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.   How did PLAN Originate?   Rebecca shares:   “PLAN is an advocacy group in BC, which started with a group of parents that came together and founded PLAN 30 years ago. These parents believed their sons and daughters could contribute and be included in the community. The work of PLAN is charting a new path that is full of opportunity for people with disabilities. They are thinking about the present, but also the future. What happens when we are gone? This is when the idea of personal support networks really began to mobilize.”   One of PLAN’s ultimate aims is to create a Good life for families, which includes; Friends and relationships, making a contribution, being empowered to make choices, a place to call home, financial stability, parents have peace of mind. The basis of all of these things is to have people and relationships to do life together with. One of the main tools used at PLAN to accomplish this is personal support networks.     What is a Personal Support Network?   We all have a network – a group of people we depend on for companionship, support and decision making. This typically includes our family, friends, and neighbors, but also professionals like counselors or financial advisors. This group can be considered your “Personal Support Network”, and it reflects your personal interests, abilities, and needs. The specific individuals will vary by person and may change over time. Some networks will include many, while others just a few people. (Reference: PLAN website)     What is the Purpose of a Personal Support Network?   Paraphrasing from the podcast Rebecca Shares:   To ensure that no one is alone or so no one is stuck in isolation. Sometimes we hear the saying that loneliness is the only debilitating disability. A personal support network is to ensure that everyone can live in an inclusive community. There are all sorts of things people in the network can do together and accomplish. At the heart of it is recognizing that we have the support that we need to live the life that we want and dream of for ourselves.     What are you seeing for people with Disabilities that have an intentional personal support network, vs those who do not?  Paraphrasing from the podcast Rebecca Shares:   “I think the difference comes in when the unpaid relational support is involved. When there isn’t a personal support network they might live a life where they don’t have friends. When a personal support network is involved and parents aren’t able to be involved, there are people that are there to play important and specific roles. At PLAN we have mentors to support families with building and maintaining these Personal Support Networks.   In different times in a person’s life, they might depend on a person’s personal support network in different ways. When they are a young person or things are going well they might do more fun and social things. At different points in life when challenging situations come up, or there is a need for planning and advocacy it might be more formal. You can often hear these networks being called natural supports, or circle of support, or microboard (which is the most formal way of setting up a personal support network). The most important thing is not what you call it, but in the way that people are working together. It is important not only for people with disabilities, but it is more like a way of being, and a way of living our lives. It is sometimes difficult to build or maintain those personal networks. PLAN has a community connector or mentors to help keep everyone connected.   How does someone build a personal support network?   Paraphrasing from the podcast Rebecca Shares:   “We start by getting to know who the person is, their gifts, what they think about, what they like to do, and the things that they care about. We build relationships based on common interests. When we build the network we focus on gifts and the uniqueness of each person. Then we think of who are all of the people in your life and build a relationship map. If there aren’t a lot of people in your life we think about if you did have people in your life, what roles would they play?   Then we look to the community. We believe that our communities are full of welcoming places and other people with gifts. When we look to build the connections we look for groups that are already in place. The role of the community connector is to create opportunities for the person to get connected.   Turning those relationships into a network is a matter of talking about what is important. We encourage people to share what is important in their life right now. The community connector can help to create the opportunities for people together.   As we reach a time where a generational shift is happening, the parents that created inclusion across the country are reaching their 70’s the rubber is hitting the road in terms of these networks and transition.   Building networks is a little bit counter-cultural, we are getting busier, and we are living more isolated lives, we don’t know our neighbors as much as we used to. ”   You can access the resources on building personal support networks (e-books and online courses) mentioned on the podcast in the resource section at the bottom of this blog).       Who plays the community connector role?   Paraphrasing from the podcast Rebecca Shares:   “Sometimes there is a natural connector in a person’s life. In other situations, the family might hire someone to play that role (Like the service PLAN offers). Some organizations train their personal support workers to take a network approach. The supporter will ask the question, who else can we involve?   Personal support networks usually come together every month or every other month to do some planning and to talk about what the priorities are for that month, and how they can support each other.”     What do personal support network meetings look like?   Paraphrasing from the podcast Rebecca Shares:   “Some are very structured and some are very natural. We plan based on what that person is comfortable with, what the current needs and priorities are. At PLAN every 6 months we create work plans. For the next 6 months, what do we want to accomplish? Do we plan events and celebrations, look for job opportunities, or find a new apartment. Each month the community connector will send a monthly update on the progress that is made.”   On the podcast, Rebecca gives examples of what support networks and roles people play in a support network can look like.   What are you currently learning at PLAN?   Paraphrasing from the podcast Rebecca Shares:   “PLAN has done a good job helping families build networks which have resulted in friendships and community contribution, but we are starting to really work toward helping people put those networks to work. Passing the baton from mom and dad to other people in the network, before we reach a crisis point and being proactive. Identifying the key roles, and what is the succession plan. Inviting network members and transferring the knowledge to the next generation. It is succession planning, what do we need to know and how do we start to pass this along. Roles like trustee, guardian or power of attorney, or more practical things like who is going to help this person go to the bank or transportation.”   PLAN has also developed a new planning tool that works to answer the question, do families have peace of mind? This is an interesting question because peace of mind is dynamic and it changes. This new planning tool helps families to understand if they have peace of mind in the different areas of life, and it helps families to think about what they need to do to get there. Listen to the podcast to learn more about this thinking that Rebecca shares.   A final message from Rebecca, “Personal support networks are about relationships. They are about living intentionally together and supporting each other and sharing what is important to us. For me personally, because of all of the changes we see happening in families and people sadly passing away, there is a real urgency for us to begin asking the question, ‘What does this {personal support networks] really look like?’, and, ‘Are we intentionally supporting each other?’. Do we know people that don’t have any relationships?, and asking ourselves, 'what we can do?'. There are all kinds of possibilities to connect and we just need to go after them."     If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.   You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!     Love & Respect, Eric Goll         Resources:   Safe and secure, by Al Etmanski    Online 6-week course called Personal Support Network Facilitation   Planinstitute.ca has several online resources in their learning center       If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes       The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!   Click Here To Listen on iTunes

#053: Personal Support Networks, with Rebecca Pauls

Joe Dale and I explore the untapped labour pool of people with disabilities, uncover the benefits of employing people with disabilities, and discuss approaches people with disabilities can take to gain employment.   Today businesses are asking, ‘Where do we find good people?’, and people with disabilities are asking ‘Where do I get a job?’. This podcast/ blog with Joe Dale, Executive Director of the Ontario Disability Employment Network (ODEN), explores these questions.   Joe has worked in the field of disability for over 35 years and spent much of that time addressing issues related to employment for people with disabilities. He is an internationally renowned speaker, speaking to business, governments, and not-for-profits on the issue of strategic engagement of people with disabilities in the workforce.   The Ontario Disability Employment Network (ODEN)   ODEN is a professional body of employment service providers united to increase employment opportunities for people who have a disability. They have over 110-member agencies, all in the business of helping people with a disability get into the workforce.   ODEN focuses on 4 core areas: Engaging and educating businesses on hiring people with a disability. They also support businesses to develop successful hiring practices. Supporting disability employment agencies with training that builds their capacities and skills. Advocating on employment for people with a disability to the provincial and federal governments. Engaging and educating other stakeholders that prepare people with disabilities for the workforce, including school boards and family groups.     The Employment Landscape   Paraphrasing from the podcast, Joe shares:   “There are a lot of barriers for people with disability to enter the workforce. However, there has been a drastic change in the last couple of years. Businesses are now moving from awareness of the benefits people with a disability can provide to their business, to how do we employ people with disabilities. And, thinking about what does it look like in our workplace?   We have done a lot of awareness over the last 10 years and this is starting to pay off. Businesses are also challenged with the labour shortages, so businesses are now looking at what was once considered non-traditional labour sources.”     Currently the unemployment rate is 5.5% in Canada, but what does that look like for people with disabilities?   Paraphrasing from the podcast, Joe shares:   “Statistics Canada reported that 49% of people with disability are not in labour market. This doesn’t include people who have never had a job or have given up on trying to find a job. For the 51% of people in the labour market, we are seeing anywhere between 16 – 25% employment rate. From this, we can assume people with a disability that are not working in Canada is around 70%.   In the US, they do their research differently, they show about 18% of people with a disability are working.”       What Do Businesses Need to Know About Disability?   Paraphrasing from the podcast, Joe shares:   “Businesses don’t know what they don’t know. Businesses aren’t fully aware of disability as a demographic. We try to illustrate what disability looks like in their community.   16% of Canadians identify that they have a disability across Canada. This is a very large demographic. If you add family and loved ones of those people, 53% of Canadian’s are impacted by disability. These people have a very strong connection to disability.   What would this look like in your place of business? We do this through case studies and by breaking down the myths and stereotypes..    We are shifting mindsets away from charity and pity, a mindset of contribution. This is what businesses need to see to get them to buy in and employ people with a disability in a sustainable way."     Learn can learn more about the Myths to employing people with a disability in this podcast/ blog with Laura McKeen.        What is the business case to employ people with a disability?   Paraphrasing from the podcast, Joe Shares the following case studies:     Case Study 1: Walgreens   Walgreens is a large pharmacy retailer in the United States that has inclusive hiring practices. In 2006, they opened a new distribution center in South Carolina. When staffing this distribution centre they started with the goal of staffing 1/3 of this workforce with people that have a disability. In the end, they hired 40% of their workforce with people that have a disability. At the end of the first year, this distribution centre was the most productive centre for all of Walgreens in the US.   A year later they opened a distribution centre in Connecticut and they went in with the same mindset and hired 45% of people with disability. It opened in 2007 and has had the highest production of all Walgreens distribution centers every year since it opened. They have a 63% reduction in employee costs! Lower absenteeism, lower turnover, and fewer workplace accidents. What they are seeing is higher productivity at lower cost. This equates to profits.   More on the Walgreens Case Study. Click Here       Case Study 2: Mark Wafer, Tim Hortons   Mark Wafer owed 6 Tim Horton’s coffee shops in the Greater Toronto Area, in Ontario Canada. 15% -20% of their staff was people who had a disability. Employees with disabilities had an 87% higher attendance rating, and no work injury claims. Mark’s coffee shops had a turnover of 38% in an industry where the average was 110%. At $4,000 per new hire, there was a significant reduction in costs. His employees with a disability had almost 0% turn over, and employees without disabilities had a 55% turn over, which was still half of the industry average. He put it down for employees being engaged because he is an inclusive employer.   These costs savings are often offsetting the costs of a little bit slower production or the cost of accommodations.   Additionally, prior to Mark selling his business, his coffee shops ranked #1, #2, #3, #4, #5, and #6 in key sales/ profitability indicators among 500 Tim Hortons coffee shops in Central Ontario.     More on Tim Hortons Case Study. Click Here     Additionally, Joe shares:   “Many businesses are contacting ODEN today to learn about how to employ people with disabilities. We would like to get to 16 -20% of employees in a workplace be people with a disability.   We also see the growth rate for people with a disability that get into the workplace their growth rate is phenomenal. Within 2 or 3 weeks they can become a different person and can exceed expectations. This is due to the opportunity, environment, and role modelling.”       How can families and agencies help people with disabilities to gain employment?   Paraphrasing from the podcast, Joe shares:   “It’s really about raising expectations. Overall our expectations of people with a disability are too low. We need to identify the goal that we have for people that have a disability. If the goal is for the person with the disability to have a job, we need to create a different path. We need to change the educational system to support this goal.   For families, if employment is a goal what happens at home has to change. We need to ask questions like, ‘What do you want to be when you grow up?’ and we need to ask ‘Do we give them chores?’. We need to raise expectations, have high goals, and change the path to support these goals.”   I agree with Joe, we need to think bigger and get out of the disability box. This requires a switch from deficits thinking to contribution thinking, and we need to be a champion for that individual. Once you have people holding low expectations of you, you live up to those low expectations. We live up to expectations, so hold high expectations and be a champion for people with disabilities by upholding their dreams and influencing others to do the same.     Joe shares:   “There is research out of the US that shows the indicators of labour market attachment for people with severe disabilities are: A single paid job while in high school Family members and others around that have high expectations   This leads to asking the question, ‘How do we mirror the experiences for people with disabilities the same as those around them?’ Peers and siblings. This includes responsibilities, chores, and part-time jobs. This helps the person to also learn what they like, what they don’t like.”     Learned Helplessness   What I have observed in my work is that parents and supporters are trying to be helpful by doing things for the person with a disability, but by doing this it creates dependencies. It teaches the person with the disability that they can’t do things. Now when that person with a disability is asked to do something they have learned that they ‘can’t’ do the task, even when they are in a new environment. In positive psychology, this behavior is called Learned Helplessness. However, this can be changed with learned optimism. By the way, my family has been caught in the learned helplessness trap. I am not judging here, simply pointing out my observations.       Work or Activities?   Paraphrasing from the podcast, Joe shares:   “It is a challenge when activities, like bowling or swimming, get in the way of the work opportunity. Generally, we don’t do these things instead of work. This is a values proposition that needs to be considered by families. The more conditions we place on work, the more difficult engaging in work becomes.”   Insight: Put the job first, remove the conditions on the employment.     What suggestions do you have for people with disabilities that are 25 to 45 years old, and have never been in the job market?   Joe shares:   “It might mean backing up a bit and starting with a part-time job that many of us would have had while in school. Such as at McDonald's. But don’t let the progress start there. We need to start creating that path.   The more experiences a person has had the better their decision making becomes on what they would like to do 1 to 2 years from now or even tomorrow.”       Fair Pay for People with Disabilities   Joe shares:   “Working for free, or saying the person doesn’t need equal pay is a very bad attitude. Society values people that work, pay taxes and contribute, and much more so than people that live off the tax system. To see someone contributing to the tax system in your community brings value to that person.   It is important for peers and supervisors to see that person as valuable. If two people are working side by side and one person is getting paid full wage, and the other person is receiving less than full wage, it tells the rest of the world that that person is not as valuable as the person making full wage beside them. That is a real damaging long-term scenario. The perception is that the person with a disability as being seen as valued is critical. I fight against anything that looks like less than a fair wage. If the perception is that the person is less valuable, who is the person that is going to be let go in an economic downturn? The person that is seen as less valued.   Also, It is a myth that by working the person will earn less money with the Ontario Disability Support Program (ODSP). No matter what the person earns they will always have more money in their pocket at the end of the day. They never lose never money by working. It is a fallacy that people will have less money if they work."     I agree with Joe’s perspective on fair wage. Additionally, consider the person with a disability that is receiving less than an equal wage. If that person is perceived by others as not valued, then they will not feel valued themselves. If I am not feeling valued I am not going to be excited about going to work. If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.   You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!     Love & Respect, Eric Goll         Resources:   ODEN Website: Odenetwork.com   Tim Hortons Case Study: Click Here   Walgreens Case Study: Click Here     If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes       The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!   Click Here To Listen on iTunes

#052: Creating a Pathway to Employment, with Joe Dale

#051: 9 Insights on Creating a Home for People with Disabilities

Empowering people with disabilities to live an incredible ordinary life.

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Empowering Ability Podcast

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