How to support people with hydrocephalus at work

As a person with hydrocephalus, I’ve had many positive experiences in the workplace, but alongside these, I’ve also had to deal with some negative ones.

So I wanted to share my experience to help my colleagues understand a bit more about the medical condition I’ve had since birth.

Since 2017, we’ve been inviting disability experts to speak to Sightsavers staff about promoting best practice around disability and encouraging an ethos of inclusion in the organisation. Our recent sessions have included presentations from Bhargavi Dakar on the rights of people with psychosocial disabilities, and Phyllida Swift on facial disfigurement as a human rights and equality issue.

I recently led a session as a speaker to share my personal journey. I thought it would be helpful to highlight how having hydrocephalus alongside my visual impairment has fuelled my passion for working in disability inclusion, and to share some of the opportunities and challenges living with multiple disabilities has given me.

This blog reflects on the impact of hydrocephalus and how employers can create a more inclusive workplace for people with brain injuries like mine.

What is hydrocephalus?

Hydrocephalus is a neurological condition caused by an abnormal buildup of fluid in the brain. This excess fluid causes the ventricles in the brain to widen, putting harmful pressure on the organ which, if left untreated, can be fatal.

It’s estimated that one in every 770 babies develop hydrocephalus in infancy, making it as common as Down syndrome, and more common than spina bifida.

Hydrocephalus can be controlled by a shunt – a valve attached to a tube that drains the excess fluid from the brain into the stomach. The children’s author Roald Dahl invented the first shunt, which was developed and marketed in the UK in the 1960s, after his son developed hydrocephalus as a result of being hit by a taxi.

How does hydrocephalus affect people?

Hydrocephalus can cause long-term complications including learning disabilities, difficulties with speech, concentration and organisation, short-term memory loss, physical coordination and balance challenges, and vision problems such as squint and sight loss.

People with hydrocephalus can also be affected in a range of other ways, which may cause challenges in a work environment. This is particularly due to the lack of knowledge about hydrocephalus and the persistence of barriers within workplaces. However, simple adjustments can usually be made to promote equitable access to employment and ensure an employee with hydrocephalus can make a great contribution and thrive at work.

Tips on supporting people with hydrocephalus

Employers can support colleagues with hydrocephalus by creating an inclusive and enabling environment that addresses the main barriers that people with the condition can face. It’s the employer’s responsibility to put these reasonable accommodations in place and ensure all team members have the right guidance to work together.

Memory

Some people who have had severe brain injuries such as hydrocephalus, stroke, meningitis and tumours will have a poor memory. This may lead to difficulties in the workplace, especially when employed in administrative roles where it’s necessary to take notes or minutes and remember names, directions and instructions.

Challenging tasks could include keeping a message in your head while writing it down, remembering and passing on a message, remembering a new role or duties, multitasking or exercising prospective memory, which can make planning and anticipating change or problems difficult.

Disorganised work environments, tight deadlines with no flexibility and a lack of reasonable accommodations and provisions for assistive devices (such as a Dictaphone or recording device and extra time to compile minutes) will all create barriers. When planning a new task, a lack of explicit written guidelines and instructions may also create barriers due to memory issues.

Inclusion tips

• Structure, routine, quiet and clear written and spoken guidance can support people with hydrocephalus to thrive in the workplace, alongside the ability to give undivided attention to one task at a time.
• In large online meetings, allow time for everyone to introduce themselves. Saying your name when you first start speaking will help colleagues with hydrocephalus and those with visual impairments to remember and differentiate between voices.
• Keep interruptions to a minimum throughout the day and provide the option to work in a quiet area.
• Discussing tasks ahead with a colleague can also help to lay plans before work begins.
• Using voice recognition software to dictate reports and tasks rather than having to write them up can help people with hydrocephalus perform their tasks and avoid memory-related disruptions.

Attention

People with hydrocephalus may find it harder to focus on a single activity and filter or block out background noise. Unless I’m doing a short, repetitive task, I’ve found that I work best in a quiet environment. In an office where I previously worked, the radio was on constantly and I found it really distracting.

Sudden, loud noises always make me jump. Even softer interruptions, like messages popping up on my screen, can distract me and throw me off course.

Inclusion tips

• Minimise sources of external distraction and ensure employees with hydrocephalus have access to a quiet place to work.
• Creating a suitable routine is very important. It’s useful to set times for people with hydrocephalus to check in with their managers and colleagues throughout the day or week to avoid interruptions. I schedule into my diary regular times during the day to check my emails and messages, but I generally set my calendar to ‘busy’ or ‘focus mode’ when I’m working on something specific.

Decision-making

Decision-making and prioritising work, including planning and starting complex projects, can be daunting for a person with hydrocephalus. Foreseeing potential pitfalls as well as challenges and obstacles can be problematic. It can be difficult to know where to start and what to prioritise.

Information overload is frequent in many workplaces where large volumes of work and fast-paced agendas are common. When information and decision-making processes lack a clear structure, timeframes and deadlines are compressed, and employees’ accessibility requirements are not adequately considered, people with hydrocephalus may struggle to feel meaningfully included and contribute.

Inclusion tips

• Effective communication and cooperation between colleagues with and without hydrocephalus and their managers is critical.
• Break down tasks as much as possible and identify a series of sequential steps in the order they need to be done. Having clear communication and reasonable timeframes for deadlines will make a huge difference.
• Using flow charts and diagrams to break down complicated projects into smaller tasks and step-by-step processes can help people who may find reading large volumes of text difficult.
• Many people with hydrocephalus will appreciate having more time to absorb and digest information before coming to a conclusion or identifying subsequent steps. Aim to give the employee confidence in their decision-making and the space and time to mull things over before jumping to a decision.

While staff with hydrocephalus may require some reasonable adjustments and support, they’re perfectly capable of engaging in strategic decision-making processes if they have the right conditions to thrive. I certainly know this very well from my experience at Sightsavers.

Over the past few years, I had the fantastic opportunity to lead our Disability Inclusion Working Group. I now coordinate our Disabled Employees Network and working alongside fantastic colleagues, I’ve had the privilege to play a critical role in the advancement of disability inclusion in the workplace at Sightsavers. Neither my hydrocephalus nor my visual impairments prevented me from being able learn and thrive in my career – but none of this would have been possible without an enabling environment within Sightsavers.

Learning new tasks

It can be harder for someone with hydrocephalus to learn a new task due to the speed at which the brain processes information being slower, and verbal explanations alone might not be effective. Many people like to take notes when they learn something new or during a meeting. However, I find it challenging because I struggle to multitask and keep up with the conversation while taking notes.

It’s crucial for employers to understand and recognise that each person is different and may require different adjustments to perform to the best of their abilities. Learning is an essential component of any job, but staff need to be put in a position to learn at their own pace and through tools and approaches that work for them.

Verbal communication is predominant in many learning situations but staff with hydrocephalus will experience significant barriers if flexibility is not ensured. For example, quick verbal instructions, especially when there are multiple steps to be taken to complete a task, will exacerbate existing difficulties experienced by staff with hydrocephalus. Showing a new task once and expecting a member of the team to follow and remember how to do it without written notes or recordings will also not work.

If you want to learn how to make your information and communication materials more accessible and inclusive, take a look at Sightsavers’ accessibility pack for inclusive communications.

Inclusion tips

• Present information in bite-sized chunks, giving time for it to be absorbed.
• Provide written notes or bullet points to accompany a demonstration, record the demo on a smartphone or create learning materials in audio and visual formats can help people to absorb new learnings and apply them to their work.
• Showing and telling will work better than talking alone. Repetition also helps – allow a colleague to regularly repeat a new task until it sticks.
• It’s easier to learn one way of doing things from a colleague rather than having a go and working out what to do, even if the task is similar to existing tasks.
• Allow a colleague with hydrocephalus to record and transcribe meetings to aid their memory.
• Take the employee’s lead in terms of their level of confidence with new tasks. Never make assumptions about what they can or can’t manage. Be prepared to explain things in a different way and to provide additional support if queries arise.

Navigation

People with hydrocephalus will find it difficult to find their way around large buildings and new or unfamiliar places. In these situations, I can often get lost and confused very easily, even when finding my way to or around a new office.

Each workplace is different and certain jobs will require the physical presence of employees to do the job. However, during the pandemic, many businesses discovered the advantages of allowing staff to work remotely. Some companies have returned to business as usual and allow very limited remote working, while others allow staff to work from home.

Commuting between home and work might be a relatively mundane task for many people, but it can be truly time-consuming, stress-inducing and energy-draining for many people with disabilities, including those with hydrocephalus. For these reasons, strict policies prohibiting remote work, including for staff with hydrocephalus, can present significant barriers and impact the performance and engagement of staff.

Similarly, however, even when more flexible policies are in place, people with hydrocephalus, visual impairments and other conditions may still experience navigation barriers. For example, when hot-desking policies require staff to use a different desk on a regular basis and remember the layout of an office.

Inclusion tips

• Employers should consider whether the physical presence of all employees is absolutely necessary (and how often). They should consider prioritising remote working opportunities for staff who may benefit from them.
• When access is required, a map of the building with accessibility features clearly marked, ideally colour-coded and tactile, can truly enhance the experience of navigating a new environment for people with disabilities. If you want to test the accessibility of your workspace and learn how to make necessary adjustments, you can download the disability-confident employers’ toolkit from Inclusive Futures.
• Flexibility is key. This may mean allowing a colleague with hydrocephalus to use a mobile phone to take photos to help navigate where to go within a building.
• Pair a new starter with hydrocephalus with a colleague who can meet and accompany them around the building until they feel confident to navigate it independently. This is also a useful opportunity for new starters and existing colleagues to get to know each other.
• Creating a guided video tour of the workspace can help staff with hydrocephalus and other impairments to prepare themselves and familiarise themselves with the environment they will need to navigate – and will give a sense to all prospective candidates as to what to expect.
• If an employee with hydrocephalus needs to perform activities outside their traditional work environment, it’s important to provide clear instructions in their preferred format about how to get to their destination and return safely, as someone with hydrocephalus may not be able to reverse the instructions. Provide relevant telephone contact details in case they get lost.
• Employers should always create space for employees with hydrocephalus to discuss all aspects of their job with their manager and to make necessary changes, where relevant. For example, it may be necessary to adjust a role so that frequently visiting external places is not a major part of the job to avoid anxiety, if the person is not comfortable performing those tasks.

Anxiety

People with hydrocephalus often experience anxiety, which can hinder them from performing to their best ability at work.

Noisy environments with lots of interruptions will pose a significant challenge. Uncertainty and not knowing who to raise concerns with will also cause anxiety. Similarly, lack of clear information and guidance, very tight timeframes, overlapping deadlines, and lack of transparency on salary benchmarks and career progressions are just some of the factors that can contribute to increased anxiety.

Inclusion tips

• Aim to reduce interruptions where at all possible and keep expectations clear. Raising concerns early in a positive, constructive way will be more successful than leaving it until there is a serious problem.
• It’s the employer’s responsibility to create an inclusive and conducive work environment, ensuring all staff (and in particular employees with hydrocephalus) have adequate opportunities and instruments to raise concerns or share situations which may lead to anxiety – and feel that their concerns will be heard and addressed.
• Employers should also foster a positive culture within the workplace and promote a good work-life balance. For example, ensure employees take breaks, as fatigue, dehydration and hunger can make it harder to concentrate and increase anxiety.
• All staff should have access to clear and transparent information on how certain decisions are made. For example, in relation to salaries, promotions, performance reviews and career progression.

Share your experience

These simple and effective tips can help employers create more inclusive and accessible work environments for everyone, including staff for hydrocephalus.

If you’re a person with hydrocephalus and would like to share additional tips – or if you’re an employer taking steps to promote disability inclusion in the workplace – please get in touch. You can contact me at [email protected]

For more information on hydrocephalus, please visit Shine or Headway