The UN Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and approaches to persons with disabilities so that persons with disabilities are viewed as decision-makers, leaders, and equal members of society. Yet, what does that inclusion look like? Kerry Thompson, DRF Information & Program Coordinator, shares best practices for enabling the participation of activists with disabilities.
Social change cannot happen without inclusion and inclusion cannot happen without social change. This dynamic is the hallmark of the global disability rights movement especially after the UN Convention on the Rights of Persons with Disabilities (CRPD) entered into force in 2008. People with disabilities should not be seen as a population to be pitied or as the mere beneficiaries of charitable giving. Instead, people with disabilities need to be viewed as advocates, leaders, decision-makers, panelists, keynote speakers, and conference attendees.
When the Disability Rights Fund (DRF) was established in 2008, the governance structure was constructed to follow the philosophy of “nothing about us without us.” That meant that people with disabilities would be represented on DRF’s staff, board, grantmaking committee and advisory panel.
DRF would revolutionize a new way of grantmaking that uses a participatory approach. That is, activists, donors and staff side by side in the conversation. The first test of that participatory practice began with DRF’s Global Advisory Panel – a panel consisting of 9 activists with disabilities from the developing world and 3 bridge-builders from other human rights movements who represented youth, women, and indigenous peoples.
These 12 leaders would convene together for the first time in Boston in March 2008. I was tasked with the logistics for bringing these 12 leaders from 12 developing countries with 11 different disabilities, 12 different spoken languages not counting those who used Braille and sign language, and 12 different cultural traditions around one table. I do not mind telling you, that I had a lot to learn and yes, I admit to being slightly clueless as to how I would achieve this.
The challenge began long before they gathered at the table; it began with getting them to the table. Barriers included a visa process that was not accessible to a person with a visual impairment and an embassy that was not accessible for a wheelchair user, visas denied to a sight guide and a sign language interpreter, missed connecting flights due to insufficient layover time for someone with a physical disability traveling through a large airport, gender discrimination preventing a woman with a disability from traveling, an airline that broke or lost a wheelchair, an airline that refused to allow a passenger with a disability onboard by herself, and customs officials refusing to allow a person with a disability into the country.
The day came when everyone was finally in the same room and at the same table. I am forever changed by what these powerful activists with disabilities had to say and what they had to teach me. The donors that sat at that table were forever changed too. A new era had begun.
Serving side-by-side with activists and leaders with disabilities on this Committee is an invaluable experience seeing first-hand what shared power between donor and activists looks like…But beyond that, it is experiencing what genuine accessibility and inclusivity looks like in term of accommodations for diverse people with disabilities. – Juliet Mureriwa, Ford Foundation’s representative to the DRF/DRAF Grantmaking Committees.
In this new era of participatory grantmaking, more and more activists, funders, and conference organizers are beginning to see the value of including beneficiaries of funding (including people with disabilities) in their work, meetings, and conferences. While there is sometimes now a commitment to not exclude people with disabilities, activists, funders and conference organizers struggle with the question – how to include people with disabilities?
To help answer that question, I share below what I have learned from my work with DRF and through my own personal experience as a person with deafblindness.
Accessibility is Not Inclusion
One must first understand that accessibility and inclusion mean two separate things. Accessibility is providing the basics – assistive devices, a sign language interpreter, materials in Braille, or providing a space that is wheelchair-accessible. Accessibility is not inclusion though. A conference could provide an interpreter, but there may be no one willing to speak to the Deaf individual during breakout sessions, meals, or networking events. For example, I attended an inclusive leadership summit in a packed room yet the seats on both side of me remained empty, no one wanted to sit next to me or talk with because my deafblindness intimidated them.
What does inclusion look like? It looks like people with disabilities engaged in a thoughtful dialogue with people without disabilities throughout the event – networking together, dining together, sharing ideas together and making plans to continue the conversation long after the conference ends.
Enabling Participation of People with Disabilities
A good first step is for organizations to look internally. Here’s a few questions to ask:
- Are people with disabilities represented on your staff or board?
- Do staff members know how to include colleagues or consumers with disabilities in your communications, operations, and programs?
- Who would be responsible for coordinating access?
- Is there a budget line for accessibility?
A lack of funds is the most common reason why an organization/conference denies a person with a disability reasonable accommodations. This is a common excuse made by both small nonprofits and Fortune 500 corporations. I never could understand why there would be a line item for coffee or for interpretation into, for example, Spanish, but not access. They are all essential to participation.
Taking steps to ensure participation is not a one-dimensional approach. You have to look at it from all angles – outreach, registration, social media, travel, transportation, hotels, visa processes, languages, meeting materials, technology, and most importantly, the people. When I say people, I mean that you have to ask the individual people what they need. Too often, organizers may assume that people with disabilities will arrange for their own access needs while people with disabilities assume the organizers are making the arrangements. There is another mis-assumption that accessibility is one size fits all. These mis-assumptions happens more often than you think.
The process may sound daunting but really, it’s just details. Below are links to a few guidelines to help you think about inclusion and accessibility.
10 years later, 27 Global Advisors later, 20 different spoken languages, 6 different sign languages, and a whole lot of assistive devices later, these lessons would teach me four important concepts– that disability rights is a human rights issue, that people with disabilities can and should be leaders in the broader human rights movement, that you need to have a Plan D when Plan A through C fails, and that real change can only happen with inclusion.
Kerry Thompson is the Inclusion & Analytics Officer for the Disability Rights Fund. She is the Founder and Executive Director for Silent Rhythms, Inc. a non-profit to promote the inclusion of people with disabilities in the arts. She serves as Vice-Chair for the Massachusetts State-wide Advisory Council, the Board of Directors for DEAF, Inc. and is a Board Liaison for the DeafBlind Community Access Network Advisory Council. In 2014, she was awarded the German Marshall Fund for the United States’ Marshall Memorial Fellowship and was a White House Fellowship National Finalist 2016-2017. She completed a Master’s degree in Human Development and Psychology from Harvard University with a focus on international law and human rights. She is the author of Deafblindness, the Left Behinds in a Leave No One Behind Era.
- Accessibility/ Reasonable Accommodation