Are you responding to my disability, or are you responding to me?

Nikki Andersen recently wrote a post about being a disabled boss.

I found myself nodding along to Nikki’s reflections on deciding how much of one’s experience to share professionally, without undermining capability or being viewed only through the lens of disability. I also related to Nikki’s reflection on being open and honest about disability as creating space for others to do the same, without feeling they had to perform ‘okayness.’ And, I’ve also experienced the moments when people adjust “so I can follow the conversation more easily” (as someone with an auditory disability). And I genuinely appreciate this.

However, Nikki also asks: “… have people always been this attentive, or are you automatically remembered and given attention when you’re in positions of power?”

And (following a chat with Nikki and some reflection), I have my own question: “Are you responding to my disability, or are you responding to me?”

And there’s not an easy answer to that. For me, disability and neurodivergence are part of my identity, so it’s not easily separated. But there’s still a difference between being met with curiosity as a whole person and feeling managed around as someone to accommodate or solve.

Nikki describes how “people adapt to disability in leadership without ever naming it,” and I’ve (often) experienced the same. But I’m also someone who likes naming things explicitly and reflecting on them openly.

I know what it’s like to have conversations happen about you, not with you. To have to perform gratitude for unsolicited help that harms. And sometimes I’m spending extra energy deciphering if and why help seems to have arrived.

As an openly disabled and neurodivergent leader, I’ve always been conscious of being over-helped by other people in leadership, but there’s a very fine line between not having the right support (or having access needs ignored) and help that undermines.

So, the more I’ve progressed in leadership, the more attention I’ve paid to what is done for me, whether it is actually helpful, and when (or if) I might need to push back or redirect. Talking openly about disability and neurodivergence has helped me to build trust and feel confident being myself, but it does create a risk of overhelp from others.

Sometimes sharing about disability can be read as an ask or a problem to solve, rather than simply a human conversation, observation, or experience. Sometimes I want to celebrate the communities I’m part of, stay connected to them, and share how they’ve positively impacted my leadership and research.

The best leadership spaces I’ve been in have made room for me to be myself and form trusted relationships. It hasn’t been through grand gestures, behind-the-scenes manoeuvres, or getting things perfect all the time. It’s been the people who:

• Understood inclusion beyond just providing access or accommodations,
• Understood that other people’s experiences in leadership may be different to their own,
• Were willing to follow and respect my lead on my own needs, and
• Knew how to facilitate inclusive and effective processes and spaces.

I love it when people turn my openness into a two-way dialogue, either by showing respectful curiosity or sharing about themselves or their access needs, too. I’ve almost always had this with teams I’ve led, and I’ve loved every moment of it.

As a leader, colleague, friend, and partner, I don’t want people to just adapt to me; I want to adapt to others, too. That is, my openness as dialogue rather than disclosure.