The week before the launch of Heading for Change, the legacy foundation founded by my late wife, Suzanne Biegel, of which I am a co-trustee, David Bank, editor of ImpactAlpha, sent me information about an investment transaction that he was thinking of highlighting to complement Heading for Change’s neurodivergence work.
David was aware that I am Autistic, and that advocacy for neurodivergent people is the core of my role as Chief Ursine Officer of Heading for Change.
It is commendable that David sought my judgment as an Autistic advocate rather than relying on his own judgment – or the judgment of the entrepreneur – that the company’s approach was good for Autistic people. In this case, I explained that funding a company providing “behavior therapy” for Autistic kids was actually not an impact investment; that practice is one that many in the Autistic Community would like to see banned for being abusive.
This situation is unfortunately not atypical in the Autism investment space, where the majority of opportunities fail to align with what Autistic individuals and the Autistic community truly need and want. Many parents of Autistic kids want to ‘fix’ their children through behavior therapies, but you don’t fix something that isn’t broken. Being the parent of an Autistic child does not give one the right to speak on behalf of Autistic people, just as being the father of a daughter doesn’t give you the right to speak on behalf of women.
This fundamental challenge extends across nearly all issues pertaining to neurodivergence and disability: The people whose voices and opinions are prioritized are not the people being served, but outsiders – often parents, other family members or medical professionals – who have asserted expertise.
As with any effort to improve how impact is delivered, investors can start by expanding the diligence questions they ask; and by engaging with existing investees to make them aware of the value you place on direct engagement with the communities they serve.
One organization that is approaching disability in the right way is the Barrier-Free Finance Initiative. Co-founded by a disabled person, and partnering with communities of the disabled, this initiative emphasizes addressing the needs of those communities as expressed by the communities themselves. Half of their senior team is women, which adds weight to the gender impact of their work.
An investment fund with the right approach is Disability Impact Partners, which is seeking out entrepreneurs who understand the importance of engaging with disabled communities to ensure that they are solving problems that communities of the disabled see as a priority.
Community voice
The good news is that if you are already investing with a gender or broader inclusion lens, you have the basic tools that you need to more appropriately engage in these spaces.
We understand that women, racial and ethnic groups, and other communities are the best source of information about the problems they face and the solutions they’d like to see. The same is true across the disability space. In the Autistic community, the medical and psychological fields are often seen as part of the problem. What the Autistic community wants is voice, acceptance, and the removal of barriers. We most definitely don’t want to be ‘fixed’ or ‘treated.’
As an investor you can engage with the companies you invest in to help ensure that their approach to disability inclusion is driven by the people they want to include, and not by ‘experts’ who aren’t part of the relevant communities. If you want to know about the challenges faced by people in wheelchairs, talk to people who use wheelchairs, not the doctors who treat them.
More importantly, recognize that each disabled person has their own unique set of needs and talents. They can only be fully included and valued when others understand what they can offer to a business or society, as well as what they need. In the disability rights movements, there is a principle of ‘Nothing About Us Without Us.’ If companies aren’t letting disabled and neurodivergent communities lead in discussions about what disabled and neurodivergent employees need, they are not respecting this principle.
If a company is explicitly seeking to provide services to a community, you as an investor or fund manager should be asking questions during the due diligence process about how they are ensuring that what they are doing is what that community wants.
Suzanne tirelessly asked these questions: “Where are the women in senior leadership? Where are the women on the board?” You should be asking these same questions about the communities of the disabled. Where are the Autistics in senior leadership? Where are we on the board? How is this company engaging with the communities they claim to be serving?
Real impact in these spaces isn’t about delivering what doctors and family members think we need, or what they want for us. It is about delivering what we actually need, and giving us a voice in the process.
