Disclosing Disabilities in the Workplace
Mary Doyle is a Diversity and Inclusion Consultant with over 25 years’ experience working with global organizations. In this blog, Mary discusses the disclosure of disabilities in the workplace, the importance of the language we use and her personal experience as a disabled person.
Discrimination against disabled people is called Ableism. We often see prejudices or stereotypes towards disabled people in the workplace which limit or prevent them from accessing equal opportunities.
As a result, it is hardly surprising that research has found disabled people are reluctant to disclose their condition(s) or discuss the full extent of their challenges for fear of being considered weak or incompetent.
Disclosure and language use
I want to move away from the word disclosure when we talk about disabled employees and people with long term health conditions. The word disclosure has no place in human relationships at work. The definition: a fact, especially a secret, that is made known.
Words are important, especially around diversity, inclusion, equity and accessibility, and we know language evolves with time and increased knowledge. The pressure to share or not to share your disability status misses the point for me. Whether people have a non-visible or more visible health condition (requiring a cool pink and black wheelchair in my case – no point in me hiding away!), the primary focus should be on making the changes that help people participate fully. In the UK Equality Act 2010, these are referred to as ‘reasonable adjustments’.
Reasonable adjustments and accommodations
Ensuring allowances and adjustments are made to accommodate the specific needs of all team members is crucial. This means making sure everyone is given the time and resources they need to do their best work and achieve equivalent outcomes to others. Having an organizational culture of being respected, heard and consulted is key. A reasonable adjustment may be a change to equipment or services, the way things are done, e.g. providing information in accessible formats.
Personally, I dislike the term reasonable adjustments. What is seen as ‘reasonable’ can be widely interpreted. The word adjustment infers a benchmark for normality and the adjustment strays from that. I would encourage the use of the word ‘accommodations’ instead as this refers to the specific needs of all people, and is not solely focused on disability, rather giving everyone the time and resources they need to realize their full potential. This is a much more inclusive and respectful approach which considers how all colleagues can benefit from accommodations such as flexible working, rest spaces, adjustable desks etc.
Unfortunately, we often see the conversation about reasonable adjustments focused on the cost incurred (which averages approx. $50), rather than the huge value brought to the employee and organization.
Whether I share my personal medical information with my employer or colleagues or not should always remain a personal choice. There is no going back after sharing it – who sees it, both in and out of context? People know that discrimination exists in society and that includes prejudices around disability. I appreciate some health conditions are more unpredictable to live with and that is still a discussion between the employee and any chosen recipient.
There are two different streams around data collection at play here. Firstly, collecting data to measure the inclusivity of your organization to ensure current and future employees are being treated fairly and can access all opportunities with inclusive and robust policies and procedures. I’m all for this, we need to have measurements alongside other inclusive behaviors (aka strategies) to ensure progress is being made and people (leadership and non-leadership) are held accountable. And the Data Protection Act covers us here – our sensitive information is highly protected.
Secondly, the personal data of the individual who has a disability or long-term health condition, either permanent or temporary, either acquired in life (80% of all disabilities are acquired) or since birth. Personal data is just that – personal, between an individual and their chosen allies/healthcare team. If you’ve met one person with paraplegia, you’ve still only met one person with paraplegia and their requirements may differ significantly from others with the same condition as everyone experiences their disability differently. We are not one homogeneous group; we are wonderfully intersectional. Trust is at the heart of sharing our medical information and stories. Brene Brown says “Stories are data with a soul”.
Identifying as disabled and Disability Pride
Asking people if they consider themselves disabled is challenging as not enough of the human race has modern knowledge of disability equality, the social model of disability and what disability actually means on a day-to-day level. There is still a good life to be had. There is often still shame in coming to terms with this new identity and it is complicated because we are multifaceted humans.
I have Disability Pride and it took me a long time to build that. I am not promoting keeping it to ourselves in shame or denial. I am promoting that with few visible leadership models to learn from, our lived experience has shown us directly that we are discriminated against, and this focus on the medical part of a whole person is detracting from the root issue of accommodations to do our best work. The more senior or privileged you are in the organization before your acquired disability/injury, the less likely your career will be cut short or derailed, thanks to your pre-existing privilege.
Attributes of disabled people are often valued leadership attributes, collaboration, enabling others, empathy, showing vulnerability, creating solutions (on a daily basis) and managing the unknown. It’s very likely great people are already right there in front of you. Let us lead.
Ditch the word disclosure, it’s no longer relevant – we’re not hiding anything. Request your specific accommodations to do your best work. Collect disability inclusion data with care, curiosity, and consultation. Share your stories with pride and confidence and encourage others to do the same.