Lessons Learned in Persevering for the ‘Good Life’

Reflections from members of the Skills Society leadership team

In preparation for writing this piece, members of the Skills Society leadership team came together in reflective conversation. We shared experiences and insights that surfaced for us as we reflected on our work in striving to support people with disabilities to lead good lives. We then looked at our collective reflections and pulled out themes - patterns that showed up across our stories. In this thought piece we share some of these insights in hopes of:

• Sparking reflection on the ‘good life’ and how to support more of it in people’s lives • Sharing our current collective understanding of what it means to ‘not settle’ and how it shows up in our work • Showing you are not alone in this work of trying your best to support the ‘good life’ of people with disabilities • Leaving with a renewed conviction and some promising practices to help support the ‘good life’ of people with disabilities

A quick note before you dive in: While we always strive to write in ways that resonate with everyone in the Skills community - people we serve, families, guardians, and community support workers - this piece leans more towards speaking to support workers and the important role they play in opening up opportunities in pursuit of the ‘good life’ of the people we serve.

What is our role in supporting the ‘good life’?

“As we know, many dreams will not always come to be, but this should not stop us from dreaming. We dream not because we are assured that what we explore will be guaranteed, but rather that dreams link us to the deep promise of life and its potential. It is this potential that rightfully belongs to people with disabilities as much as anyone else” - Michael Kendrick, 2006 (Long time disability rights advocate and systems change leader)

As paid supports in the lives of people with disabilities, we feel like a big part of our role is upholding people’s right to dream and direct their own lives. Historically, in times of institutionalization, people with disabilities were not really allowed to dream. Too often others in their lives made assumptions about what they wanted or needed and told people with disabilities what a ‘good life’ is and looks like for them. Stories from people with disabilities who were institutionalized have shared in the past that these were often dark times where hopes, dreams and wishes were ignored. In current times, it is now more widely accepted that people with disabilities should be the leaders of their lives and we need to learn ways of centering people we serve in defining what it means to live a ‘good life’ - a life that is vibrant, meaningful to them, with opportunities to try new things, learn, make mistakes and have support to try again.

Coming alongside as mindful sense makers

Mindful sense making is the act of noticing, reflecting, and digging deep into the ‘why’, the meaning and/or motivations behind something. Mindful sense making is not decision making, rather it is a way of trying to make sense of information and experiences by sensing and meaningfully listening. Supporting a personalised ‘good life’ requires us as fellow community members, allies, and supports in people’s lives, to come alongside people - truly listen to and be with people. This might look different for each person, but no matter who the person supported is and their disability, there are ways to carefully and meaningfully listen, look, and sense what is important to that person and what helps make their life great. This work requires being-in-good relationship with people and a genuine desire to get to know the person for who they are - creating space for people to imagine, express, and share what the ‘good life’ looks like to them, and then taking the appropriate steps to support them in achieving it. When people might not have clear ways of communicating wishes and hopes, then we often have to get more creative to go and explore things in community together-to learn by hanging out with people and paying attention to what resonates with a person by how they react and respond. We also should ensure we learn from and listen to people that know a person well (like family members) to understand a bit better what might be important to a person for a ‘good life’.

Promising signals of a ‘good life’

As mindful sense makers, we can always be on the lookout for signals or hints that someone is leading a ‘good life’. Periodically asking ourselves: “is the person I’m supporting really living a good life?” can help us know if our support is on the right track or if we need to pause and re-evaluate. Below are four ‘signals’ that emerged from our collective reflections, that can help us know a bit better if someone is living their good life. We call these “signals” on purpose - they are not meant to be taken as absolutes and there is always room within them for the person we are serving to express themselves in the ways they want! For example - a general hope is that everyone have at least a few freely given(unpaid) relationships in their life, but how many and the form these take is very personal! Some people might enjoy having many friends and acquaintances while others prefer to just have a few close friends.

#1 A person tells us their life is good!

Of course, a big piece of knowing if someone is living a ‘good life’ is asking them! Some people can tell us outright if they are happy and satisfied with their life. Other people might not be able to tell us with their words, but they can show us with their body language, pictures, emotions, and behavior. One piece to keep in mind though when asking people about their life, hopes, and dreams, is that sometimes it can be hard for people to imagine different possibilities for themselves. Sometimes, when someone hasn’t had a lot of opportunities to try new things, learn, or explore, it can be difficult to see how else their life might look. For example, if someone has only ever gone bowling or swimming, it might be hard for them to imagine doing something else and considering trying something new might be scary. An important tension we must always explore as supports in people’s lives is how do we both respect their wishes but also help them see new possibilities for themselves? One way we continuously navigate this tension is by being mindful sense makers as described above - being-in-relationship with people, truly listening, and fostering trust. Coming alongside people with disabilities - as allies - exploring new possibilities and what the ‘good life’ is for them. Emma with Josh Ramsay, the lead singer of one of Emma’s favorite bands, following their solo tour concert.

#2 A person has opportunities to make choices and set the direction of their life

A big piece of a ‘good life’ is having opportunities to make choices and set the direction of your life. Just like anyone else, people with disabilities need to have their rights respected, space to make decisions, and be empowered to be the leaders of their lives. This shows up in more formal ways - through things like person-centered planning meetings - but also in more informal ways - such as in the ways supports talk to people, seek input from people, and approach their work.

For example, if someone needs some new art for their place, instead of saying ‘I’m going to buy some art for Julia’, it can be reframed as ‘I’m going to support Julia in choosing some art for her place’. Opportunities for Julia to browse different types of art and show what she likes and doesn’t like, and supporting Julia in choosing where it goes in her home can be built into the process.

#3 A person has people who love and care about them in their life

Another ‘signal’ that someone is living a ‘good life’ is relationships - having people who love and care about you. Having many different kinds of relationships - acquaintances, close friends, family, colleagues - and not just having to rely on paid supports is important. As human beings, we are social creatures, literally wired to connect with others and do life together with other people. So when these relational pieces are missing it hits us hard - as Brené Brown says, when our needs for a deep sense of love and belonging are not met “we don’t function as we were meant to. We break. We fall apart. We numb. We ache. We hurt others. We get sick.”. A big part of our role as supports then is to help be social bridges for people - help people find opportunities to meet others, help people connect with others in those spaces, and help people nurture and deepen those connections over time. This can be tough and can take time and creativity, but even if not saying it regularly, people we serve really rely on support to help bridge and sustain healthy relationships.

#4 A person has meaningful things to do and places to go

The 4th insight we had of a ‘signal’ of a good life that surfaced in our reflections, was one around having meaningful roles, things to do and places to go. If we reflect on our own lives, most of us can name several different activities, places, and spaces that hold meaning in our lives and that we are connected to. Unfortunately, many people with disabilities face barriers in connecting to activities, places, and spaces and haven’t been given the opportunity to really explore and try new experiences. We use the word ‘meaningful’ very intentionally here - to draw attention to the fact that it’s not just about the person being busy - it’s about the people we serve having opportunities to try new things, explore and land on some things that they really love. When places in community have been found that are meaningful to a person, one further question we have often asked ourselves is if people we serve are simply “in” a community setting, or if they really are “of” the community setting. Being “of community” has to do with having relationships and connections and being known and welcomed as one is.

A helpful tool that can support us in remembering and looking for these ‘signals’ of the good life is the Skills Society vision and citizenship model. The four ‘signals’ above fit within the citizenship model used to guide our work, and can support us when asking ourselves: “is the person I’m supporting really living a good life?”.

Never settling, continuously learning

“It is in seeing that we need to be open to the unknown, because somewhere in its depths are ideas, options and potentials that are genuine and authentically good for people with disability” - Kendrick, 2006

The theme of this annual report - “Good enough isn’t enough: Never settling - striving for the ‘good life’” resonated with what emerged from our collective reflections. A common thread amongst all our stories was that we strive to never settle for good enough and recognize we are continuously learning and growing in our efforts to support people to lead good lives. We hope you can gain some energy in knowing you are not alone - we are right there alongside you not settling and moving ahead.

What ‘not settling’ looks like

Not settling involves perseverance.

This might look like: • Not giving up or backing down when faced with barriers and ‘ya buts’ • Having a curious explorer mindset • Being creative, and alongside people served to help imagine possibilities

We recognize that ‘not settling’ is really hard work. We too see the barriers that people we serve, families, allies, and supports often face in striving for the ‘good life’. Not settling “in no way requires us to wear rose-coloured glasses” or to ignore these barriers; “it simply asks that we not become so preoccupied with the barriers in life that we no longer dream” (Kendrick, 2006). That we not give up, and are relentless in our efforts to support the ‘good life’. Mathew with his sister, brother, and nephews riding the Banff Gondola.

Not settling involves vulnerability and healthy risk taking.

This might look like: • Embracing the discomfort that is often part of the journey. There is value with vulnerability and trying things that are uncertain in how they will turn out. This is part of learning and growing • Knowing and understanding that in the pursuit of the

‘good life’ - meaningful relationships, personal interests and aspirations - people may, and often do, make mistakes, fail, experience setbacks, disappointments, and learning curves, and as supports, embracing these risks and being ready to support people through them

There are always a handful of reasons not to do something, but conversely there are also a handful of reasons to do the new “something”. The latter often requires us to be vulnerable, take risks, and ‘not settle’.

Promising practices of ‘not settling’

As we brought our heads together, some promising practices of ‘not settling’ surfaced - tangible actions we’ve tried or witnessed over the years that seem to help support the ‘good life’ of people with disabilities. Some of these promising practices are shared here. Being creative in finding opportunities for people to share their gifts and talents and have an active role

This might look like: • Booking a 1.5 hour MyCompass Planning Lab to shake up thinking and help generate some creativity in connecting a person’s gifts in community • Getting involved with our CommuniTEA Infusion (TeaVan) project, where there are opportunities to meet folks from different walks of life and contribute as a community builder • Being more open and attentive to the not so obvious signals from people that when we open our minds, this can help us see more of people’s unique gifts and sometimes reveal new opportunities to help someone connect their gifts in creative ways in community

Nurturing existing friendships and family connections

Always being on the lookout for, and readily pursue, opportunities for people to connect with others.

This might look like: • Supporting someone to ask a person they see weekly at the Nina (art center) to go for coffee • Looking at a person’s routine and seeing if there are opportunities for them to connect with others rather than doing solo activities (e.g. going to the gym vs joining a cycling group) This might look like: • Supporting the person you serve to write and mail a letter or postcard to a friend or family member • Assisting the person to connect virtually, arrange for coffee dates, and plan activities with friends and family on a regular, recurring basis • Remind folks to call people or text and check in, in a reciprocal way

Seeing people as people first (not their disability)

This might look like: • Reflecting critically on what your own assumptions and beliefs about disability are • With the person you serve creating a list of all the things they can and like to do when thinking of new things to try (rather than thinking just of what they can’t do) • Learning and getting better at skillfully and safely navigating supporting people who want to explore intimate relationships

Leveraging the different skills and talents of your team

This might look like: • Asking for help or to discuss something tricky during a team meeting • Utilizing the diverse perspectives and collective wisdom of your team, by brainstorming together around ideas to build community connections and foster relationships

Seeing yourself as a community connector, advocate, and ally rather than a caregiver

This might look like: • Knowing the person you are working with and reaching out to community organizations to find a space that would be welcoming • Be aware of opportunities within the community such as community connectors through the programs the city has, opportunities to participate in community league boards etc.

Courage

This might look like: • Standing up for someone you serve when their rights are infringed upon • Going out of your comfort zone in helping someone connect to a new role or opportunity • Advocating, asking critical questions and offering potential solutions, for example when spaces are unwelcoming or inaccessible Curiosity and a habit of asking questions

This might look like: • Continually remembering to check in with the people we support and ask them about their life, hopes, and dreams and what’s important to them • Thinking critically about the way you’re doing things and whether settling for good enough or still striving for supporting the good life • Thinking outside the box and exploring unconventional and creative ideas

References

Kendrick, M. J. (2006) False Realism And The Unexplored Potential In People’s Lives. Families for Change, 2(18). Family Advocacy, Sydney, Australia

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