“Access is a beginning, not an end point … accountability toward disability access means committing to cycles of success, failure, and (re)iteration. Put another way, access is a long-term commitment to do better” (Hamraie, 2016, p. 267).
Two of the most common misconceptions I hear in leadership about disability and neurodivergence are that access and adjustments are just available on request (with perhaps the implicit assumption that this is the solution to disability) and that people are safe to simply share that they’re disabled or neurodivergent to receive access.
For both, relational and structural considerations are missing, as well as a reluctance to go beyond access as a technical ‘fix.’
Relational and structural
On the surface, relational and structural approaches sound self-evident. Focus on relationships (relational) and change systems (structural) when providing access. In practice, these can be neglected or approached with surface-level engagement, with nuances of disability culture missed. Additionally, with recent articles on disability discrimination in recruitment, it’s clear why people are afraid to disclose disability.
There’s also a reason that the principle of nothing about us without us exists. It isn’t just a nice mantra. For disabled people, it’s a cornerstone of self-determination and carries with it individual and community histories of marginalisation and harm.
It’s why building access together makes the difference, because:
“Ultimately, building the world this way affords us more adaptive choices when unexpected situations arise. But inclusive design does not mean designing for disabled people, which is a paternalistic view that positions them as passive recipients of benevolent accommodation. It means designing with them” (Treviranus, 2026).
Done well, relational and structural approaches to inclusion engage with layers of power, privacy, culture, and labour embedded in systems. And this is a good thing. But the lived experiences of those dynamics are not always immediately obvious to those providing access.
Follow my lead
While in leadership roles, board and governance spaces, and in continuing to learn, I’ve become more determined to remain visible as a disabled and neurodivergent leader. Looking to the lack of disabled leaders in university leadership, Harpur and Szücs describe how disabled leaders “are more likely to encounter discrimination than to be provided with opportunities to succeed.” And this isn’t limited to higher education.
I’ve grown to feel the need to take the lead on my own access and find my own way. I’ve developed my own systems and strategies. However, I do value spaces where trust and reciprocity are established, and this can be done with people.
As I’ve progressed in my career, taking the lead on access has become even more important from a risk perspective, even if it creates more personal labour. This is partially because barriers are different, and with that, more difficult to share, as they sometimes reflect disability histories not easily understood by those without lived experience, or subtle dynamics that can’t be directly challenged safely.
Leadership introduces different structural dynamics that can create power imbalances when it comes to asking for or receiving help or support. Getting access ‘right’ can have different or higher stakes, with new intricacies to navigate.
In my career so far, though, the biggest challenges related to disability haven’t actually been access needs or reasonable adjustments (though that won’t be the same for everyone).
Instead, the biggest challenges are rooms that require bracing before entering, carry assumptions, or leave you sleepless: managing disclosure risks, finding the balance between safety and self-advocacy, or trying to reclaim agency. It’s these barriers which need to be removed if we want more “disabled leaders to speak up, rise up, and stay up” (as Cox describes).
It’s not always the barriers that seem most obvious that require the most work to navigate.
When I do think about access barriers, I’ve had many library colleagues thoughtfully find a new setting for us to talk in when they realise that a location might not be the most ideal for sensory and auditory processing. And I’ve appreciated it and felt care – though I also had the opportunity and felt comfortable declining if it wasn’t helpful or what I wanted.
That isn’t always the case, though. And as Dax writes, non-disabled people have:
“….a delightful habit of telling disabled people what we want without having asked us first. This leads to sitcom-worthy misunderstandings where additional barriers are placed in our way, and harm is done to the community. When disabled people then speak up, we’re called ungrateful” (Diary of a Disabled Person, 2020).
Often, those who help “hold all the cards…call the shots and make the rules,” and there are risks in confronting help when those dynamics are at play.
Bury the lede
Relational and structural approaches should make visible the processes and dynamics that might otherwise be implicit or buried. Done well, these approaches provide support and reduce the risk that individuals bear the weight of systemic failures or dysfunction alone.
Too often, though, I hear stories of people sharing about their disability or access needs, and in the process, meeting privacy breaches, structural conflicts, or dysfunctional systems. Disabled people bear the consequences of this, yet it surfaces dynamics that often go well beyond their individual needs and reflects wider organisational matters.
That organisational ‘lede’ can get buried in well-intentioned inclusion work, and carries real consequences.
Fluent in my mask, lost on me
I feel it’s also fair to say that for Autistic folks, masking (or camouflaging) can ‘bury the lede,’ though in a very different sense. And it’s similar to how many disabled people place energy into passing as non-disabled.
Masking involves hiding or reducing Autistic traits to avoid stigma and exclusion and to blend in. It’s a survival mechanism. It may make it difficult to ‘read’ an Autistic person’s needs if they’re masking any difficulties; however, the cost of this masking is uneven. It’s Autistic people who absorb the increased risk of isolation, autistic burnout and shutdowns, reduced self-acceptance, and exhaustion from masking.
I once wrote about how my partner likened my masking to watching a performance – but not of an actor, of an athlete. That is, masking is taxing because it takes a high cognitive load.
This adds another layer that goes beyond just access and requires understanding what safety, belonging, and disability community and culture mean to people.
I appreciate Hamraie’s provocation that “meaningful access requires collective labor” and also that there’s a need to “include the expertise of those most affected by the lack of access while shifting labor to those with more privilege” (2016, p. 268). In reality, that does take time to navigate and do well, for everyone.
As systems are complex and access is iterative, things will go awry, which is why following the lead of disabled people matters most in those moments. As the Disability Royal Commission’s research report titled ‘Hierarchies of power’ outlines, disabled people whose:
“…. experience shapes their social position as outsiders can ‘enjoy an epistemological privilege’ that enables them to see society and its biases and ideologies differently from those with power and privilege. It is this deep knowledge that grounds the importance of disability leadership and collaboration in any efforts to redress disadvantage, without which uninformed people in power merely perpetuate the violence of paternalistic systems” (Clifton, 2020, p. 17).