Summary of Actionable Outcomes

This complex challenge could not be fully addressed in three sessions and the group identified a need to create a working group going forward that might include partnerships with other organizations in order to leverage their access to various communities impacted by this issue. Another point of consensus for the group was that engagement of the community in determining what is most relevant in collection, analysis and disclosure of data is essential to meeting this challenge.

One approach explored by the group was the need to study relevant historical surveys and data, with the goal of releasing this data publicly in order to raise awareness. This approach could then be used to support the escalation of the issue through a media campaign. The group also identified the approach of engaging Independent experts, such as the UN Special Rapporteur on disability, as another way to escalate the issue and raise awareness. 

Another approach identified by the group was the establishment of community controlled data and evidence governance. Important questions were raised in terms of who is controlling the data and the public message about that data, and who has access to data that already exists. This included identifying the need for self-governance over the creation of surveys and over the data that is collected. The example of the First Nations Information Governance Centre was shared, with a focus on using the OCAP (ownership, control, access, and possession) framework.  

The group also identified the need to challenge assumptions in how research is done by following the 3 dimensions of inclusive design and employing other models such as OCAP and EGAP (Engagement, Governance, Access, and Protection). 

Other steps were identified, including:

• Developing a handbook of types of evidence   
• The creation of a knowledge commons, including  
• gaining access to peer-reviewed data by pooling resources, and  
• the ongoing de-scattering of “peerless” research, including research links, downloads and previous research 
• Engaging Statistics Canada to raise awareness and collaborate in developing an approach to producing valid proof

The following sections describe the detailed outcomes from each of the three co-design breakout groups.

Group 1 Journey Mapping

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Description – Group 1 Journey Map

What

Setting up a working group through partnership with other organizations.

Why

To set up overall strategy, so that we all move towards the same goal and achieve better results

How

• Who will set up this group? We Count?
• Will it have experts / people with living experience / government?
• What tools to use?

Who

Experts (community-based and people with living experiences, and other knowledgeable people) who will be dedicating their time and effort.

Challenges

• Finding and engaging experts. They would need to talk and discuss who else to engage.
• Time is another important aspect to consider.
• Also funding/money
  

Action 1: Sourcing relevant academic research/ journal articles. Provide access to trusted members.

Why

• Not everyone has access to this information.
  

Who

• People in the working groups can help to provide access

Challenges

• Subscription services are paid. This is costly. Only larger companies/universities have access

How

• Mentorship of scholars
• Community engagement workshops, making information more accessible
• Partnering with universities since they already have access
• Making sure there are sharebacks from the group to larger community
  

Action 2: Study of past/historical surveys/studies. Release information and existing data publicly.

Why

• Starting from scratch isn't always that easy, lot of work. How to not waste the work that has already occured 
• Keep institutional memory alive.

Who

• Community organizations who have already collected data/surveys

Challenges

• Information is not publicly available

Action 3: Looking at what is happening/Research

Why

Understanding the clear situation/ different aspects

Who

• community members, combination of both, which people who hold power, teachers.
• Getting to the right people who can be powerful allies

Challenges

• Making sure there is safety for people who engage with government organization/ ministry etc

Action 4: Putting Disability related questions into the surveys

Why

• Help to get data for the disability community to advance our agenda give us evidence that was lacking

Who

• People who are responsible for the surveys

Challenges

• Don't know if you could have access to that kind of information

Action 5: Scatterwall: Ongoing de-scattering research links, downloads and previous research

Who

• Working group, CEOs in charge of the research that isn't released

Challenges

• This research might not see the light of day and is lost

Action 6: Setting up public-use survey having/collecting own data having own surveys within the disability communities

Why

• To ensure: timeliness, relevance, cost

Who

• Survey experts in collaboration with people with lived experiences

Challenges

• Expertise of survey designers, cost, who is in charge of running these surveys, time

Group 2 Journey Map

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What

Multiple lines of evidence should be accepted as valid.

Why 

Because empirical standards foreclose on other forms of evidence, thinking and reasoning.

Action 1: Develop a handbook of types of evidence

Why

We need to examine the assumptions underlying our research methods

Why

There is a need to educate researchers and policy-makers on inclusive and community-driven approaches

How

Example – Human Rights Glossary:

https://bchumanrights.ca/wp-content/uploads/BCOHRC_Sept2020_Disaggregated-Data-Report_FINAL.pdf

Action 2: Address equity barriers in the system of evidence-making 

How

1. Challenge assumptions in how we research by following dimensions of inclusive design and other models like EGAP and OCAP
2. Community controlled data and evidence governance
1. Engage community in determining what is most relevant in collection, analysis and disclosure of the data (p. 79 from Disaggregated Data: Grandmother’s Perspective)

Why

All that are affected should have equal voice in the process. Want to engender a voice for those who are voiceless and have reciprocity in the process.

Who

1. Provide resources and support to the community

Challenges

• Need to have guiding principles for inclusive and respectful processes
• Must include people on their terms
• The value-base of the approach/analysis and understanding of the evidence (e.g. cost of everyone involved)
  • Ideally the community designs the research
• Research designers – must account for diversity and human difference in their design
• Community in collaboration with government
• The individual vs. the cost of the problem created by the system
• Framing of the question can still bias the analysis of the data or understanding of the evidence (e.g. beginning with the approach that the disabled are expensive leads to a false cost-based line of argument)

Action 3: Recognize the power of the community to create their own evidence

Group 3 Journey Map

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Description – Group 3 Journey Map

What

Strategic sharing of collective stories or data to inform decision makers.

Challenges

Dismissal of story as anecdotal.

How

Creating the safe(r) spaces where data can be gathered.

Why

To get people in the margins of the margins to participate.

Challenges 

Engaging BIPOC and other groups.

Action 1: Meeting people where they are

Challenges

• Including folks without access to internet
• Language barriers - providing translation

How

• Look at pre-internet approaches
• Creative ways to share internet
• Provide food and financial compensation
• Train the trainers
• Engage with e.g. NWAC (Native Women's Association of Canada)

Challenges 

How to do these things when we're remote?

Action 2: Prioritizing BIPOC and intersectional groups to gain information that is missing

How

• Think strategically about partnerships that disrupt typically dominant groups, and support diverse disability communities
• Leverage existing support groups, or networks in place already - ask them to reach out.
  • E.g. encampment support network, food banks, disability justice network
• Map existing networks
• Address English language supremacy

Why

Understand if they want to be engaged, and how they want to be engaged.

Challenges

 It takes a lot of work and time to form strong, trusting partnerships, need leadership in different regions, coordinating, explaining how this initiative benefits all.

Action 3: Collaboration between advocacy and equity seeking groups

Why

Intersectionality provides us with shared values.

Action 4: Media Campaign

Why

Escalate the issue.

How

• Generate societal pressure with a petition
• Shaming the government who signed on to CRPD (Convention on the Rights of Persons with Disabilities)
• Ask the UN to intervene by engaging the Special Rapporteur on disability

Action 5: Create a "critical mass", when those we want at the table can't be there

Challenges

Not placing undue burden on folks, but also making sure those who want to be involved are able to be.