Question: We have a board member who is questioning our past practice of sharing disability information (specifically, the nature of the disability) with funders and each other. What are your thoughts on determining disability status for compliance purposes and sharing same?
Reply: The minimum requirement by law is that you ask the simple “do you have a significant disability” in your board application for a yes/no affirmation. This covers the compliance issue.
Each center can expand on these requirements themselves, if the consumer-controlled board of directors chooses to do so. Policies and procedures can define additional requirements, such as the publication of the individual’s disability on the list of the directors of the board. If the organization chooses to do this, the board application should also include a line for the type of disability, and a statement that as a consumer-controlled organization you will be sharing disability information with the public.
We find that not all people with disabilities are ready to share that information. People are at different places on their journey, and if their disability has involved shame in the past it takes time for them to shed that, even in our more safe environment of disability support and pride. You can ask the board annually if they wish to disclose a disability. Sometimes they come to the conclusion later that their disability is significant enough to include. The board member may fear questions from friends or an employer if their disability is public knowledge. The simple yes on the application we suggested does meet compliance requirements. If you adopt a policy to routinely disclose, it may be that some board members will not be counted as you determine your “more than 50%” because they do not wish to disclose.
When speaking to the board or to an individual, I usually say, “It is so helpful if you are willing to share the type of disability you have. That will help us know if we have a good cross-disability representation on the board, and your example will encourage others with an invisible or less known disability to embrace their disability and disability rights.”
If the person asks for privacy you probably must honor that request, but work with them to understand the importance of self-disclosure. Is that helpful?
Followup: I think our process for eliciting self-disclosure works very well. The concern arose regarding providing that information to others, such as funders. I wonder how much we must be willing to provide to demonstrate compliance with board and staff composition requirements.
Reply: Your application or survey or other written documentation should be enough for compliance. You are not required to list those who have a disability for public scrutiny if your board asks you not to. Your public materials can provide generalized information such as, “Over 60% of our board members disclose that they have a significant disability” or state that the majority of your board members have a disability and that the disabilities cover a range across different types of disabilities.
It is important to add, though, that in the spirit of consumer control, peer support and disability pride you will want to continually provide training, history and peer examples to new board members as they work to better understand the true philosophical underpinnings of Independent Living.
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I’d like to hide from assumptions, ignorance, and exclusion. There is a social, economic and psychological cost to be identifiable as Disabled in a culture that equates physical appearance with value. For some of us the first challenge is gaining and maintaining self-esteem as well as acknowledging our internalized stigma. I wish I could have that struggle in private; I feel vulnerable, exposed.
I “m not sure when I suspect I “m being demeaned if it is prejudice on their part or my own feeling of inferiority. I reject that as an idea but the feeling comes to me first.
I can’t ‘overcome ” my disability but I try to overcome the messages imbued with pity, charity, condescension that were everywhere. The very concept of equality and independence is a rebellion of social norms.