Written evidence submitted by the National Association for Disabled Staff Networks (NADSN) STEM Working Group
(DIV0017)
The UN Convention on the Rights of Persons with Disabilities (CRPD) indicates that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. The disability could be lifelong or acquired and the symptoms may fluctuate. Disability is commonly described and understood through a deficit lens in STEM and academia. The social model of disability developed by Mike Oliver (Disabil Soc. 2013) acknowledges environment or society as disabling. e.g. a non-ambulatory person in a wheelchair is disabled not by their inability to walk, but by the absence of ramps, lifts, and accessible facilities. Disability encompasses hidden disabilities, long-term illnesses, as well as mental health related disability
Disabled research staff, including both researchers and support staff, and particularly those belonging to multiple forms of the protected characteristics, are highly underrepresented in STEM. There is a clear discrepancy in the number of people who identify as disabled in the general population, those who undertake higher education and those in academic employment (Brown and Leigh, Disability & Society 2018). The Royal Society report that in 2018/19 the percentage of known academic staff in STEM with a known disability was 3.8%, which is lower than in other subject areas. The representation of disabled researchers in STEM remains low - with representation falling by ~40% from undergraduate to postgraduate level in physics and engineering. In 2018-19, only 7% of UKRI studentships across all research councils were awarded to disabled researcher (UKRI). The Royal Society Report released in January 2021 showed that students with a known disability are less likely to complete their degree and are less likely to find employment within 6 months of graduation. STEM UG & PG leavers with a social communication/autistic spectrum disorder have the highest rate of unemployment 6m after graduation. People with disabilities are less likely to be represented at senior levels and be involved in research (JISC & Royal Society 2021).
Disability can impact anyone at anytime in their life. Disability and neurodiversity impact not only on the individual affected, but also family members so disability support goes beyond the individual and may indirectly exclude those who are supporting a disabled person. This has been highlighted during the pandemic when considering the number of people in contact with individuals who are immune compromised, a form of disability. With the number of people affected by long COVID, the problem is likely to become bigger following the pandemic. Neurodiversity in particular is likely underdiagnosed due to lack of awareness so the full impact of exclusion is likely not known.
Intersectionality of different characteristics, such as race, sexuality and disability are greater than the sum of the parts. Discrimination due to multiple characteristics is magnified. For example, a disabled gay man may find LGBT+ spaces inaccessible but may also be excluded by the disabled community. Disability can magnify the exclusion and negative impacts caused by other forms of discrimination.
Typical when evaluating disability, it is seen through the medical or deficit model. However, often it would be more appropriate to view it through the social model of disability. On this basis the Equality, Diversity, and Inclusion Group in Science and Health (EDIS) have changed their approach. Instead of asking people what their diagnosis is and then making assumptions about what difficulties this will cause, they now ask what day to day tasks people have difficulties with. This approach helps to reduce the burden of disclosing sensitive medical information, reduces stigma and incorrect assumptions from poor disease knowledge. In addition, many conditions have variable effects from day to day as well as variable effects from person to person to just a diagnosis is not a suitable basis for assessment. This can lead to reluctance to take on the burden of disclosing information about disability, chronic illness or neurodiversity due to fear about stigmatisation, fear of misconception, perceptions in the workplace or previous traumatic experiences.
There are many other potential barriers, including:
● Inaccessible work environments with no provision and complex processes to making it harder for people to remain part of the workforce.
● Poor access to disability adaptations and Access To Work related to short term contracts and lack of stability in the research career.
● Negative perceptions of disabled people make it harder to find a job.
● Funding does not take into account disability. If disability provision, including basic items such as height adjustable desks is built into the grant costings it makes the grant less competitive.
● Disabled students have dedicated support but this does not exist for staff. Additionally, most diversity and unconscious bias training completely ignores disability, chronic illness and neurodiversity.
● Unrecognised impact of standard changes to the working environment (e.g. restructuring of departments, change in lighting).
● Inequality in research funding - in 2018-19, only 7% of UKRI studentships across all research councils were awarded to disabled researchers (UKRI).
● Untenable workloads and expectations widening the gap in achievement.
● Expectation of moving between institutions can be unreasonable for certain disabilities. This leads to the concept of glass partitions, which may explain why more disabled people move into teaching positions compared to research jobs.
● Lack of accessibility to resources required to perform, e.g. labs, offices, conferences, library facilities, training, software.
● Conference culture can increase barriers due to inaccessibility preventing promotion of work and formation of collaborations. Conferences can be both physically inaccessible as well as inaccessible for neurodiverse staff.
● Inequitable institutional policies including recruitment, performance review, and promotion procedures and language.
● Lack of visible role models and representation in decision making groups.
● Lower levels of belonging reported by disabled and other minoritised students and staff in STEMM (RSC Sense of Belonging 2021, Fink, A. et al. 2020).
● Difficulties with moving between career paths if needed, often resulting in a pay cut
● Representations of disability within society/media as a negative thing, or used for inspiration porn. This has been exacerbated through COVID where deaths have been justified by using the phrase ‘underlying conditions’.
● Systemic ableism is endemic within academia and science.
● Health and safety is weaponised against disabled scientists.
● Lack of awareness, sensitivity and training.
● Inflexibility of incapacity provision within pension systems that force disabled staff to completely leave research rather than reduce their hours.
Lack of diversity reduces the ability to connect with and serve the patient populations medical research is supposed to be helping. This causes the loss of very valuable voices, which makes it harder to solve problems. Restricting viewpoints means research is less effective and less successful. There are multiple papers showing the benefits of people who have experience of being both researchers and patients in research for the vital insights they bring to the work they undertake (Zahnow; Nature Reviews Cancer 2019, Riggare; Nature Medicine 2020).
In health research the pandemic has highlighted how research conducted without diversity incorporated leads to poor care for people from these backgrounds. We need to retain and celebrate disabled researchers’ unique expertise to offer the research environment and thus the scientific outcomes of the funded research
Innovation. To continue working and succeed, disabled STEM researchers often need to implement innovative strategies to overcome barriers. Historically, some of these approaches have proven transformative for non-disabled workers facing major societal constraints. Examples are the use of subtitles for the hard of hearing community helping people who are learning English. A lot of technologies developed for disabled people allowed the quick transition to home working for the wider population during the pandemic lockdown (Shew; Nature 2020).
There have been measures for gender/sex (Athena Swan), and ethnicity (Race Equality Charter), but there is a lack of formal support and incentive to employers from the government. This is an unmet need as without financial incentives or compulsory government targets, history has shown that change does not occur.
There were disabled researchers and the UK parliament discussion groups (February 2021) leading to diversity and inclusion of researchers in policy engagement document, detailing how ableism is systemically embedded within academia and STEMM, making it hard to address underrepresentation of disabled people.
Although some training on disability exists, it is rarely compulsory and is not well evidence based or validated (Phillips et al; Journal of Occupational Rehabilitation 2016). The Wellcome Trust ran a series of culture cafes across higher education in 2020 to establish areas that require change. They are currently working on actions based on their fundings.
We propose some possible solutions:
● Create a dedicated Access To Work service to serve academia due to the job role and relationship with employer being so different to other jobs. Serving people in STEMM would be helpful due to the different nature of our work, particularly with experimental work using specialised environments/equipment, involved health and safety assessments, and short term contracts.
● Create a legal framework that impacts funding for disability, such as Athena Swan for gender equality .
● Change UKRI and NIHR policies to make them fairer to people with disabilities.
● Enforce research funding agencies to conduct an EDI assessment of their funding schemes and processes to ensure they are accessible.
● Incorporate disabled voices in all other policies, and embed them from the beginning, not just tickbox ‘consultations’ at the end.
● Pots of money (similar to UKRI FLF Plus Fund) to support the additional costs of being disabled attached to research grant applications - eg 10% to fund support workers, extra equipment, conference attendance etc.
● Look at disability intersectionally along with other marginalisations - barriers compound.
● Provide education to remove the negative associations around disability.
● Raise awareness, to help create an atmosphere where disability / chronic illness / neurodivergence is accepted and not seen as a liability
● Have inclusive work policies. For example use of face masks when someone has a mild cough or cold can protect all staff and students with imune system disorders from any respiratory infections and provides a more inclusive workspace at little cost. https://www.nadsn-uk.org/immune-system-disorders-in-the-workplace/
January 2022