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Patient voice

The global disability community and the DE&I discussion: a match that needs to be made

By Pam Cusick, senior vice president, Rare Patient Voice

By Pam Cusick, senior vice president, Rare Patient Voice
The global disability community and the DE&I discussion
Diversity, equity and inclusion (DE&I)
Pam Cusick

Diversity, equity and inclusion (DE&I)

Diversity, equity and inclusion (DE&I) is a universally hot topic. The history of exclusion in the workplace is well documented, and while globally there are programmes and laws in existence to prohibit exclusion, there is still a long way to go in terms of true equity.

While DE&I programmes are most often focused on improving opportunities for women and people of colour, people living with disabilities are often left out of the DE&I discussion.

Around the world there are an estimated 1.3 billion people living with disabilities. Many in the rare community experience both visible and invisible disabilities. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) aims to protect people with disabilities and provides the following definition of those with disabilities, “…those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. This definition applies to patients with rare and chronic conditions who may not consider themselves to have a disability. It is important to recognise that there are protections for people with disabilities that patients may benefit from, not only in their daily living but also in the workplace.

At Rare Patient Voice, our 100,000+ patients and caregivers are among those who may experience discrimination in the workplace. While they may not consider themselves disabled, it is important to remember that it is their right to ask for and receive appropriate accommodations which will allow them an equal opportunity to enjoy the benefits of employment. As a parent of a young adult with disabilities, I have seen first-hand the challenges that not having these accommodations can cause. Even when requested, the modifications provided may not always be appropriate. Patients and their caregivers need to know how to ask for accommodations, but even more importantly, how to identify which ones will be useful and help them succeed. No individual with a disability should be denied appropriate accommodations, nor should they avoid applying for a job because of their disability.

A 2021 report from the US Bureau of Labor Statistics found that in 2020, 17.9% of people with a disability were employed, while for those without a disability, 61.8% were employed. The unemployment rate for persons with a disability was 12.6%, and 7.9% for those without a disability. Additional highlights from this data include:

The global disability community and the DE&I discussion
Diversity, equity and inclusion (DE&I)

Those with invisible disabilities have often had a challenge proving their need for accommodations in the workplace. Because learning disabilities, ADHD (attention deficit hyperactivity disorder) and many rare and chronic illnesses are not generally observable, it is up to the employee to seek out accommodations and ensure they are getting the assistance they need. It is important to note that in the past, many employers have not had the knowledge or experience to assist with these accommodations, and many are still not prepared. The good news is that the focus on inclusion has put employers on notice that they will need to be flexible and accommodate their employees. More good news for people with disabilities is that large corporations are now investing in disability recruitment and training. Many companies have launched disability hiring and inclusion programmes which include building inclusive workplaces and creating programmes to better understand the nuances of disability inclusion among staff.

Global data from the Valuable 500, a global business collective made up of 500 CEOs and their companies who innovate together for disability inclusion, shows that disability hiring and development are now taking priority around the world.

  • in the Asian Pacific region, large corporations like Fujitsu and Amazon continue to lead the way on hiring DE&I roles across Asia and the Pacific
  • in Europe, the job market is looking for more broad-based DE&I roles compared to other regions. For example, some brands are looking for DE&I communications specialists and product managers
  • in Latin America, large corporations like Coca-Cola are advertising for various diversity and inclusion roles in South America, with most continuing to be advertised in Brazil
  • in Africa, Kenya has plans to come up with a National ICT Accessibility Standard, a first in Africa. The country seeks to help people with disabilities find work, stay connected and live better-quality lives by giving easy access to digital services. The standard will promote digital inclusion of people with disabilities
  • in North America, large companies are investing in DE&I campus recruiters, while Google and Stanford University are also teaming up to launch a recruitment programme for people with autism. Many DE&I roles across the US have become remote working-friendly

All people deserve a level playing field in the workplace. As evidenced by this data, progress is being made globally in a variety of concrete ways. However, there is still much more to be done, beginning with including people living with disabilities in any DE&I discussions. For people with rare and chronic diseases in particular, accommodations that may make an equitable working environment, salary and benefits a reality can make a tremendous difference in their lives.


The global disability community and the DE&I discussion
Diversity, equity and inclusion (DE&I)

About Rare Patient Voice

Rare Patient Voice provides patients with the opportunity to share their voices to improve medical products and services.  Who knows better than you about your journey and experiences?  They connect you with researchers who are developing products and services to improve the lives of patients with rare diseases.  Your voice can help you as well as others with your condition.


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