A group of diverse advocates of color, encouraged by the surge of statements in solidarity regarding the value of Black lives, launched the Roadmap For Equity Pledge.
The pledge required advocacy organizations to commit to understanding and embracing the perceptions of all individuals regardless of racial classification, skin color, religion, biological sex, sexual orientation, gender identity or expression, age, disability, marital status, citizenship, national origin, ethnicity, genetic information, and/or any other identifying characteristics.
The pledge called on all organizations take a proactive approach when developing programs and policies to ensure that diversity, equity and inclusion (DEI) are an integral part of its culture, programs and policies.
The pledge explained that statements in solidarity are not sufficient solutions, within themselves, when it pertains to incorporating DEI into an organization’s construct. Rather, the pledge called for actionable solutions designed to develop an environment that is truly equitable, inclusive and diverse.
The pledge called on each organization to implement meaningful solutions to develop targeted policies aimed at implementing DEI protocols and strategies that effectively establish an inclusive environment for its constituents, membership and employment. The pledge called for each organization to maintain a diverse and inclusive corporate environment and public profile, by adopting an authentic desire to unLearn biases and misunderstandings that have prevented the inclusive diversification of the organization’s constituency to date.
Some proposed actionable DEI objectives to be considered by each advocacy organization include the following:
- Budget for the costs of appropriate third party DEI expert consultation into the organization’s annual budget to incorporate DEI policies and programs into organizational culture and governance.
- Consult with third party DEI experts to ensure that websites and marketing materials do fall into the category of tokenism and instead are designed to include and represent real world diversity, inclusiveness and acceptance of all variations of people. After the organization’s website(s) has been designed in an inclusive and diverse manner, enroll the website into the “Our Lives Matter” DEI Certification program and earn the honor of having the “Our Lives Matter” Certified digital badge at the footer of the websites’ domain.
- Utilize third party DEI experts to conduct a review of all resource distribution methods to address any biases that may exist against the equitable distribution of resources and opportunities to the global communities of color, the LGBTQAI+ community, and/or the disability community.
- Consciously increase the diversity of speakers, presenters and perspectives at events to include diverse expert advocacy professionals, avoiding the practice of tokenism.
- Intentionally create sessions or panels that focus on health disparities/challenges for the real world diverse rare disease community within the organization’s disease-specific community and address solutions and actions that may be taken to correct healthcare disparities/challenges for communities of color, especially those with debilitating chronic conditions. It is not enough to simply identify issues. Upon addressing issues, actionable solutions must be communicated and addressed.
- Blind the demographic information of all applicants for the distribution of patient support resources and/or opportunities until the decision to award said applicants have been made.
All nonprofit patient advocacy and community service organizations that took the Roadmap for Equity Pledge have agreed to commit to one or more of the suggested actionable objectives in order to take steps closer to developing a more diverse, equitable and inclusive environment for the staff, members, volunteers and communities that rely on its services and support.