Professor Amanda Kirby, CEO of Do-IT Solutions., Campaigner for Neurodiversity, Medic, Knowledge Translator, researcher
Scholars over the past years have pointed to the relentless focus on the ways in which identity is constructed through the interpretation of visible bodily markers. If a disability is less obvious to others is it then perceived of less value? It has always been harder for us to discuss what is in our mind compared to our physical selves. It is only in recent times, for example, that mental illness has become a more open topic. One that we feel more comfortable to talk about.
If society disables you, it creates limitations for you by not enabling you to be your best self. If your disability is less obvious to others this can also result in feelings of ‘otherness’, difference. It can result in feeling marginalised or set aside.
We categorise and use terms such as invisible, non-visible, and hidden disabilities to describe disabilities that are not immediately obvious to others. These terms have all been used incorrectly to be synonymous with the umbrella term neurodiversity.
If society disables you, it creates limitations for you by not enabling you to be your best self
What is Neurodiversity?
However, neurodiversity in fact encompasses the cognitive variability in us all. Around 15% of the population have a range of neurodivergent traits. These traits are different from society’s views of those who are considered to be neurotypical. This is not dichotomous with a hard and fast line that says you are definitely neurodivergent or neurotypical. It is messy.
Some people may have a diagnosis relating to a specific cluster of symptoms and signs. The expression of these traits till relatively recently has mainly been associated with difficulties and terms associated with this include ‘disorder’ (as in ASD and ADHD) and impairment. As a consequence of this, a person may have a negative sense of themselves and end up hiding their traits from others. Or alternatively attempting to merge in with their surroundings to meet society’s neurotypical expectations. We sometimes use terms such as masquing or camouflaging.
‘Visible’ or ‘Invisible’
But being either ‘visible’ or ‘invisible’ are not mutually exclusive and discrete categories. We may also choose to hide facets of who we are dependent on where we are and who we are with. We may also choose to hide some of ourselves because of past events arousing feelings of shame or even fear. Whether or not an identity is visible depends on many factors. These include; context, circumstance, the audience, and their interpretation. I may play with my grandchildren and act silly but when I am talking as a ‘professor’ I have that facet of myself on show.
Samuels (2003) nearly twenty years ago, argued that a focus on recognition and being visible has restricted our very understanding of what disability is and marginalized those that have certain disabilities that are less obvious to others. It perpetuates the need to have visibility as a central organizing tenet for understanding identity and accessing social recognition.
In order to gain support, it is necessary to stand up and tell others who we are. Describe what we can and cannot do, so our disability has to be defined for others. But at the same time, this behaviour is not expected of everyone else.
The reality is we may all be disabled or become disabled during our life. We may all need some support or adjustments at some time. One in four of us will have a mental illness at some time in our life, and nearly half of us will become disabled as we age
Neurodiversity – ‘Coming out’
In an inclusive society, there would be no need to have to ‘come out’ at all. As each person’s needs would be considered and reconsidered as time and context changed.
Who we are and what we present to others is dependent on many variables. The feminist legal scholar Crenshaw (1989) was one of the first to talk about intersectionality and the ways in which anti-discrimination laws in the United States erased the specific experiences of black women through the treatment of “race and gender as mutually exclusive categories of experience and analysis” (p. 57). Intersectionality recognizes that “it is not possible to separate out the categories of gender, race, class, and sexuality, nor to explain inequalities through a single framework” (p.12).
We use language such as disclosure, revealing, and ‘coming out’ not only in the field of neurodiversity but in other worlds that intersect parts of who we are. The pressure on the person to have to speak up and reveal our ‘hidden disability’ can become an imperative otherwise the neurodivergent person may be valued less. There is even a sense of anger by others if the information is seen to have been with-held. This can then even be misinterpreted that the person is being less than honest.
How much do we want to reveal?
Is there pressure on us being our ‘authentic self’? How much of us do we want to reveal? Do we really want to be totally honest about how we feel? Sometimes we choose to present our work selves and ‘pass ourselves off’ as a member of the dominant, neurotypical group. The reason for doing this may vary from person to person. Not disclosing can be because of oppression and fear of being outed as a member of a marginalized or minority grouping. This may also relate to poor past experiences.
Alternatively, we see coming out as being worth it. Revealing our invisible identities successfully in the workplace can mean that disclosure can sometimes be the only option to access accommodations or gain adjustments. This can result in the need for complex decisions about when, where, and how much to disclose.
We may make a decision not to disclose because we think it will affect our co-workers’ or line manager’s perception of us and our ability. Our fear of the response from others to our disclosure may elicit former challenges we may have had in school. We know that people with neurodivergent traits are at a higher risk of having been bullied in school. Bullying is a subtype of aggression that may be defined as systematic abuse of power in which a person (i.e., the victim) is exposed, repeatedly and over time, to negative actions on the part of one or more other students. Bullying can have serious consequences for us and has been shown to be related to later behavioural and emotional problems (Scholte et al. 2007).
Up to 75% of school children with Autism Spectrum Disorder have been noted to have been bullied. There is also research relating to those with specific language impairments (Conti-Ramsden and Botting 2004), and with ADHD (Kumpulainen et al. 2001), and Developmental Co-ordination Disorder (Dyspraxia) (Piek et al, 2005). However, interestingly in this latter study, the consequence of bullying impacted greatly on the self-esteem of the children with DCD. They were less resilient than children without DCD.
Non-disclosure may be related to our fear that the prevalent stereotypical views of conditions such as autism or ADHD. We may be concerned that others may then limit our progression as we may be seen as less capable. We may also worry that even when we have plucked the courage to tell that we won’t be believed. There is evidence that people with less visibly obvious disabilities are often thought to make fraudulent claims to a disabled identity and are seen as less legitimate candidates for disability accommodations (Lingsom, 2008; Valeras, 2010).
Finding the right words
If we decide to disclose, we need to have the right words to do so and we may need to gain a golden diagnostic ticket before being believed. This can mean seeing a professional to bare our souls and perhaps take a prescribed assessment which can feel like a test which you may pass or fail. But even with this, there is no level playing field. Processes are not standardised, and professionals come with a different knowledge base and use different tools. Access to even the potential of gaining a golden ticket is not readily available to all and can be costly. It is a life-lottery.
Do we need to name it?
So, do we really need to present with a diagnosis or a specific label for support in the workplace? While gaining a specific diagnosis relating to neurodivergent traits can be helpful for some people and can lead to specific support and intervention. We need to see that in a workplace setting this should not be necessary. Just because you work in different ways to some others it may not mean you are or see yourself as disabled. We are all a sum of many parts. Some are visible, and some we may share and some we may choose to hide?
It is also important that many people don’t fit into one specific diagnostic box or another. As neurodivergence isn’t neat but in fact multi-dimensional. The overlap between conditions is the rule rather than the exception. Neurodivergence is not homogenous and is not a unitary concept. It represents a group of people with varying traits that differ from the neurotypical.
This presents a conundrum in proving indirect discrimination as under the UK Equality Act (2010) for there to be indirect discrimination, the “particular disadvantage” must affect those with “the same disability”.
Where do we go in 2021?
It is not the employer’s right to know if someone has lung cancer so why should it be the right of employers to have to know whether you have ADHD or Dyspraxia and be seen as wrong in some way if you decide to hide this? Open dialogue with a prospective or current employee is the easiest way of providing support and gaining appropriate adjustments. This can only happen if the person feels safe to communicate and has the appropriate means to do so.
The employer’s failure to discuss adjustments with the employee can amount to not making reasonable adjustments. However, we do need to recognise that sometimes it is necessary to gain professional advice for the adjustments (not necessarily for a diagnosis) as the employee may not have the knowledge or experience to know what would be of the greatest help.
If we can ensure a workplace is an inclusive place and equitable for all we change the conversation altogether. Awareness is important about neurodiversity. The more we can understand how we think and communicate differently we can work better together.
Amanda is the CEO of Do-IT Solutions, an emeritus professor at the University of South Wales and one of the top 20 UK 2020 voices on LinkedIn. She comes from a very neurodivergent family and is bringing out a book later in this year with Theo Smith – NEURODIVERSITY AT WORK