Beyond Disabilities

Min shares her story of living with a hearing difficulty

When I was in primary school, my teacher noticed that I often struggled to hear and answer questions in class. Concerned, he suggested I see a doctor. During the examination, the doctor told me that my ear canals were smaller than average and the direction is at a different angle. Initially, I didn’t understand what this meant, but gradually I realized that I have to manage my hearing difficulty. Despite this challenge, I’ve managed pretty well over the past 40 years. As a student, I always made sure to sit at the front of the class so I didn’t miss any important information. This habit continued into my professional life, where I positioned myself at the front of workshops, meetings and conferences. Traveling poses its own set of challenges though. I have to carry hearing amplifiers, which I find cumbersome but necessary.

As the founder and president of the LexisNexis Legal & Professional (LNLP) Enabled Disability Employee Resource Group (ERG), I lead our efforts to create more inclusive and supportive environments for colleagues with disabilities. We regularly organize company-wide training sessions, webinars and events to enhance disability awareness, debunk myths and reduce stigma. Our ERG works closely with the RELX Disability Accommodations Team to recommend assistive technologies and communicate to colleagues who are interested in this topic. I firmly believe in fostering an inclusive culture where diversity is celebrated. Although open communication about disabilities can sometimes be uncomfortable, it is crucial for making meaningful progress. Encouraging such dialogue helps break down barriers and promotes understanding, ultimately leading to a more inclusive workplace for everyone.

Brian shares his story of living with Exocrine Pancreatic Insufficiency (EPI) & Median Arcuate Ligament Syndrome (MALS)

I had suffered with upper abdominal pain for several years on and off, and this pain became chronic in 2019, when my life changed and the digestive function of my pancreas stopped working properly. Later on, I was also diagnosed with MALS, which is a compression of the celiac artery by the median arcuate ligament, also leading to abdominal pain. My life changed with these diagnoses and I have to take replacement enzymes every time I eat, plus also be very careful on what I eat. I also have daily pain to deal with but this is managed well by a drug for nerve pain.

I don't necessarily need any accommodations but sometimes if I get a more acute pain I need to rest, however I am improving with how I manage and cope with these conditions. Somehow they can make you more resilient and I have had amazing support from my colleagues and management. The flexibility to work from home helps me as I can manage my time and the food that I eat more carefully.

I feel very blessed to work for Elsevier, as not only is the mission close to my heart, but it also enabled me to connect with two amazing ladies who lead Mission Cure in the States, a charity whose mission is to find a cure for pancreatitis. Elsevier was collaborating with Mission Cure to run a datathon to research whether some drugs could be repurposed to find this cure. I was also very lucky to be able to go on a 6 month sabbatical for the first half of 2023, this was an incredible opportunity for me to focus on myself, rest and build up my strength.

Being part of Elsevier Enabled has made a big impact on me. Hearing stories from other chronic health sufferers with visible and invisible disabilities helped me realise that there is hope and recovery is possible. In addition, the focus of the Osmosis team on rare diseases gave me an opportunity to tell my story on the Raise the Line podcast which reaches medical students, doctors and nurses.

Kara shares her story of living with multiple disabilities

I was diagnosed with Turner Syndrome in 1982. I am smaller than most people at 4' 6". I am lucky as this is the only symptom I have from Turner's. Many people with Turner's Syndrome have heart, kidney or vision complications. I have what they call Mosaic Turner's Syndrome which means that I am missing a part of one of my X chromosomes. This impacts me tremendously every day. I am limited in my choices in purchases such as cars, clothes and shoes. I have difficulty reaching things both at home and at stores or my place of employment because shelving units and counter tops are set for people of average height.

I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) around 2006. This causes me to become dizzy upon changing positions, feeling faint and even passing out because my blood pressure drops dramatically, increased heart rate causing shortness of breath and inability to complete even simple tasks like moving laundry from washer to dryer. I am unable to walk long distances which can limit the activities in which I am able to participate.

I was diagnosed with Diabetes around 2008. It impacts me daily as I need to monitor my blood sugar at least three times a day.

My support system encourages and supports my goals and aspirations by pushing me to be the best I can be with education and knowledge. They celebrate my victories with me and provide a shoulder when times are hard.

More employers should be like LexisNexis Risk Solutions. We offer our people a hand up where needed and support them emotionally and physically to make their dreams come true. I especially love the Hidden Disabilities initiative and believe it should be talked about more.

Given the right equipment and opportunity anyone is capable of doing just about anything they set their mind to. Never limit someone by telling them they can't do something. Show them how, provide them the right equipment and help them learn to do it.

Adam shares his story of living with autism

I was diagnosed several years ago. Autism affects my ability to understand people around me and to deal with people who talk in certain ways. We can generally create systems very well but have difficulty fitting in with other people's systems. While we generally learn what we are interested in with much greater attention to detail than neuro-typical people we can have enormous difficulty in concentrating on things we have no interest in and this can lead to areas in which we are seriously challenged. We generally have poor fine motor skills which totally collapse under stress leading to frequent errors such as using a mouse or in doing household activities. Stress and emotions generally are much more intense and can lead to meltdown or shutdowns. Sensory stimulus can be unbearable to the point of feeling like it is physical torture at times - such as a repeated noise or bright light can also cause meltdowns or shutdowns.

I take time out when things feel overwhelming. I have a fidget spinner and will sometimes get up and jump up and down to ground the energy built up inside my head at times. I have the support of a psychologist specialized in Autism and I have support in socializing and work problems from a local government funded Autism center. My friends are used to me and know I mean well even when sometimes I am awkward socially.

Having associations like LexisNexis Enabled helps to create an inclusive workplace for people with disabilities and my team leaders and managers have always shown a good understanding and willingness to learn more about how Autism affects my work.

Fiona shares her story of living with hip dysplasia/osteoarthritis

I was diagnosed aged 7 with a dislocated hip, likely the result of hip dysplasia that had lain undiagnosed since birth. It was almost inoperable at the time of diagnosis and I would have eventually ended up wheelchair-bound but for the work of a pioneering surgeon (I even ended up in a medical textbook as a result).

By my mid-30s, the condition had resulted in severe osteoarthritis which required a hip replacement. It was a new lease of life for me but it requires a LOT of management; I do at least an hour of daily physiotherapy and generally have to stay active to avoid having pain and mobility issues which result from the original dislocation.

I struggled with hot-desking because I need a specific type of chair to support my back and hips properly, so I asked for an allocated desk and chair that was set up specifically for me. It makes a big difference as sitting awkwardly or unsupported even for 30 minutes can result in pain. I also asked for a locker at a height I could access without bending down.

The LexisNexis Enabled group is a really good and positive initiative. It's created a safe space for people to share their stories and is beginning to make an impact on the wider business.

Elena shares her story of living with mobility issues

I use a wheelchair due to a birth defect. My daily life is affected in the sense that I have to do things differently than other people. I live independently and do drive, but I am faced daily with architectural barriers and with people blocking parking, ramps and other things designed to help people with mobility issues.

One misconception is that people with disabilities always have a caretaker. That is not always the case. Every person with a disability is different. There are many people who live with a disability who are independent and live full lives just like anyone else.

I think communication is the key. Employers need to be open to employees' needs. Also, communicating to other employees their commitment to diversity and inclusion creates an environment where any employee is free to be themselves and express their needs.

My main strategy is positivity. I look for my way to do things every day to make my life easier. I think that the work that ERGs do is crucial to making a positive difference in creating an inclusive workplace. Educating each other, creating empathy, and learning from one another all contribute to better teams, better working experiences and I think ultimately to a better company as a whole.