1. Strengthening Your Voice Strengthening Your Voice: Public Speaking for People with Lived Experience of Mental Health & Addiction Challenges Susan Eckerle Curwood, Knowledge Broker, Opioid Resource Hub, Provincial System Support Program, CAMH Betty-Lou Kristy, Provincial System Level Lived Experience and Family Advocate, Educator & Speaker, Peer Support Substance Use Systems Lead & Consumer Survivor (CSI) Lead Faith Rockburne, Strengthening Your Voice Graduate Addictions & Mental Health Ontario Annual Conference May 30, 2016

2. PROVINCIAL SYSTEM SUPPORT PROGRAM CAMH’s Regional Offices Supports Ontario’s Comprehensive Mental Health and Addictions Strategy, through system interventions. Provides capacity and expertise in: knowledge exchange information management implementation coaching equity and engagement evaluation

3. Forms of Evidence We use an inclusive definition of evidence, as framed by the Evidence Exchange Network (EENet). 3

4. Opioid Context “Ontario is in the midst of a public health crisis- a crisis stemming from the inappropriate prescribing, dispensing and illicit use of opioids and other narcotics." Dr. Jack Mandel President, College of Physicians and Surgeons of Ontario (CPSO) September 2010

5. 5 OPIOID RESOURCE HUB The Opioid Resource Hub aims to address the issues of opioid dependence through increased awareness, community engagement, and professional supports. ORH achieves this through: Knowledge translation and exchange Training Resource development Brokering the voices of people with lived experience

6. “According to most studies, people’s number one fear is public speaking. Number two is death. Death is number two. Does that seem right? That means to the average person, if you have to go to a funeral, you’re better off in the casket than doing the eulogy.” – Jerry Seinfeld, 1993 6

7. Stigma Both opioid use and opioid treatment are stigmatized Limits the availability of care and discourages people from seeking treatment Stigma also discourages people from speaking publicly about their experiences All of these issues go beyond opioids to broader mental health and addictions issues 7

8. Impact of Sharing Lived Experience Raises awareness and educates people Reduces negative attitudes and behaviours Humanizes the issue – anyone can develop problems 8

9. Impact of Sharing Lived Experience Can change attitudes and behaviours of health care workers and others May impact prevention Encourages people to access help Reinforces a message of hope for everyone 9

10. Strengthening Your Voice Developed by: people with lived experience affected families addictions professionals Developed for opioids but relevant for all mental health and addiction experiences 10

11. Why was the Strengthening Your Voice Training/ Guide Developed? The purpose of this guide is to train people with lived experience of prescription opioid problems to tell their stories publicly. This is inclusive of ‘family’ members/caregivers. Two Main Audiences: People with lived experience and/or family ready to share their life journey (stories) related to problems with prescription opioid use Support workers & Event planners This guide & training are tools for empowerment To foster the voice of lived experience & ‘family’

12. Principles in the development of the Strengthening Your Voice Guide Grounded in a harm reduction perspective Respect among contributors Safe inclusive space Trauma Informed Lens Grounded in a harm reduction perspective Respect among contributors Safe inclusive space Trauma Informed Lens Presenters are people with lived experience and/or family members with problematic prescription drug misuse

13. Meet the Strengthening Your Voice Trainers SEAN LEBLANC Ottawa After surviving a series of personal tragedies and an addiction to opioids, Sean LeBlanc founded DUAL (Drug Users Advocacy League) to actively promote the human rights of people who consume drugs and is an example of the essential need to empower those with lived experience Drug Users Advocacy League: Nothing about us, without us

14. Meet the Strengthening Your Voice Trainers Betty-Lou Kristy and…. …..her late son Peter Kristy Beattie Halton Region-Georgetown 1.Provincial System Level Lived Experience and Family Advocate, Educator & Speaker 2.Peer Support Substance Use System Lead & Consumer Survivor (CSI) Lead Mississauga Halton LHIN Enhancing and Sustaining Peer Support Initiative

15. Why speak publicly? Sharing Your Journey (Story): Why Speak Publicly About Your Experiences? Sharing Your Journey (Story): Why Speak Publicly About Your Experiences?

16. Speaking out this way serves several goals: People who have lived through an experience know it better than anyone else and can speak passionately about it; humanizes the issue Talking about your experiences, helps to educate others and potentially avoid problems of their own May also engage, inspire and encourage others to seek treatment if they are experiencing difficulties Message of hope and resilience Modeling Recovery Reduces negative attitudes and stigma

17. Addressing Stigma Stigma: Negative attitudes (prejudice) and negative behaviours (discrimination) toward people based on a characteristic that others see as negative Sometimes we internalize other people’s attitudes and begin to think negatively about ourselves Prejudice and discrimination create barriers to getting help and to recovery

18. 18 Audience Question What do you think makes a good public speaker?

19. What makes a good public speaker? Several things contribute to success as a public speaker: –Show self-confidence –Be prepared –Be aware of the language being used –Be engaging –Know your audience –Be positive –Have a sense of humour

20. Checklist 1: Potential gains and risks of sharing your story Checklist 2: Questions for developing your story Checklist 3: Know your presentation style Checklist 4: Public speaking tips Checklist 5: Commonly asked questions Checklist 6: Emotional Wellness Checklists for Speakers

21. 21 What do you think are some of the gains a person can expect to receive from sharing their journey (story) through presentations? Audience Question

22. Checklist 1: Potential gains and risks of sharing your story Healing (Recovery) Education Empowerment Personal Growth Opportunities Self-Esteem Dignity Respect Hope

23. 23 Audience Question What do you think could be some of the risks a person could experience from sharing their journey (story) publically?

24. Checklist 1: (continues) Potential gains and risks of sharing your story You feel your story could be rejected or minimized. You feel shame and fear being judged. You see someone from your past sitting in the audience You risk triggering yourself. Your emotions may overwhelm you. You may not be able to get the support you need when you need it. You could experience legal consequences if you talk about illegal things you have done. You could experience social or employment consequences when you expose details of your life. Think things through before making any disclosure..

25. 25 Audience Question What do you think would be some of the questions a speaker must think about and/or ask in order to develop their story?

26. Checklist 2: Questions for developing your story What key point do you want to share? What are you comfortable sharing? Do you prefer speaking with a script or brief notes? Or do you prefer to develop your story as you speak Are you able to manage triggers as you develop your story? Are you prepared emotionally? How will you include the issue of stigma (prejudice and discrimination) in your story?

27. Checklist 2: Continues Questions for developing your story Audience What would the event organizer like you to focus on? Who is in the audience? What does the audience know about this topic? What will help keep the audience’s attention? What type of language does the audience use (for example, medical terms, slang)? Are you willing to answer questions posed by the audience? Are there some topics you do not want to answer questions about?

28. Checklist 2: Continues Questions for developing your story Logistics Will you be speaking on your own or as part of a panel? Who else is speaking? Who is speaking before and after you? What topics are other speakers focusing on? How can you complement their presentations or provide alternative viewpoints? How much time are you given to speak? Will you be using presentation tools, such as PowerPoint or a film?

29. 29 Audience Question What are some of the different presentation styles a speaker should consider when sharing their journey and why?

30. 30 Checklist 3: Know Your Presentation Style Scripted Pros and Cons Writing it out and reading it to the audience Pros: Provides you with a guideline Keeps you on topic and timeframe Allows you to experience & negotiate triggers (before & during) Helps you keep nerves and emotions in check as you follow the script Cons: Detracts from the natural feel of your story Risks being boring for the audience if you show no facial expressions and make no eye contact

31. 31 Checklist 3: continues Know Your Presentation Style Semi-Scripted Pros and Cons Referring to bullet points and a closing statement written out Pros: Helps you appear more natural, genuine, engaging and spontaneous Empowers you with the ability to alter your story to suit the event, audience and circumstances Cons: Risks your speaking longer than you wanted to

32. 32 Checklist 3: Continues Know Your Presentation Style Non-Scripted Pros and Cons Speaking without any notes Pros: Helps you appear more natural, genuine, engaging and spontaneous Empowers you with the ability to alter your story to suit the audience and circumstances Cons: Requires someone who is a good speaker and can manage all scenarios Risks your speaking longer than you wanted to Risks your getting off topic and appearing sloppy and unprofessional Doesn’t allow you any protection in case your emotions get the better of you Increases the likelihood that you will be affected by a negative reaction from the audience

33. 33 Audience Question What do you think would be some of the public speaking tips a potential speaker should consider?

34. Checklist 4: Public Speaking Tips Understand Your Goals – what message do you want to get across? Know your audience Prepare your story ahead of time (scripted or unscripted) Tell a story – chronological events really engage the audience Practice – this will help reduce your nervousness

35. Checklist 4: Continues Public Speaking Tips Take a deep breath – this will help keep you grounded Consider your presentation style End with emphasis Watch your appearance – what you wear is important, we want people to focus on your message not your clothing

36. Checklist 5: Commonly asked questions Questions which seem to be the most triggering Risks to managing question & answer period Stigma within questions

37. 37 Audience Question What are some of the different things a lived experience and/or family speaker would have to be aware of to ensure emotional wellness?

38. Checklist 6: Emotional Wellness Taking care of yourself as a speaker – before, during and after a speaking event Do you feel safe enough within yourself to share your story? Are you aware of your triggers? Do you have a plan for how to take care of them? Do you have someone you can talk to and support you about sharing your story publicly? Does talking about your story publicly feel like a positive experience for you? Are you able to advocate for yourself with organizers regarding remuneration / proper treatment?

39. Information for Support Workers and Event Planners The guide contains common questions raised by support workers and event planners Some examples include: Why work with people to share their stories? How can I tell if clients are ready to share their experiences? How do I recognize triggers in clients who are preparing to tell their stories? What do we as the event planners need to provide the speakers

40. What we heard… “I liked the support I got from teachers and peers. I felt connections with all the speakers. This was the perfect opportunity to learn public speaking…I thank the trainers for the opportunity to speak and learn. Thank you!” -SYV Participant “Before coming I was hesitant, only because I’ve never enjoyed communicating in an organized fashion with groups. This has helped me monumentally in being comfortable around people I have never met. Hearing everyone’s story has encouraged me to keep fighting for my health, sanity, peace of mind & recovery…”- SYV Participant

41. The first training was Jan 2012 in Toronto before SYV manual was completed and launched

42. The second training was Feb 2014 in Ottawa (we forgot to take a group photo)

43. Our third training was for the GTA area Oct 27 th 2014 (we remembered to do a group photo)

44. Our fourth training was for the BTCN Speakers@ CAMH Oct 9 th 2015

45. Faith’s Experience 45

46. Upcoming Training Sessions Tuesday, June 28 – Toronto Tuesday, July 5 – Ottawa For people with personal or family experience with opioids Cost – FREE –Includes breakfast and lunch –Honoraria provided and reasonable travel expenses covered Space is available, but seats are limited 46

47. For More Information or to Apply Susan Eckerle Curwood seckerlecurwood@camh.ca Opioid Resource Hub https://www.porticonetwork.ca/web/opioid- resource-hub/home orh@camh.ca 47

48. Questions and Discussion Questions?