Self-advocacy is often described as an important part of living with a disability.
Know what you need. Understand your rights. Explain your access requirements. Ask for reasonable adjustments. Speak up when something isn’t accessible.
There is value in being able to advocate for yourself. It can give disabled people greater choice, control and agency but there is another side to self-advocacy that we talk about far less. Having to do it over and over again can be exhausting.
Access fatigue is the cumulative mental, emotional and practical exhaustion that can come from repeatedly having to explain, request, negotiate and manage your own disability or communication access needs.
It isn’t simply the fatigue someone may experience because of a disability or health condition. It is the additional work created when access isn’t already there and the disabled person has to help create it.
What does access fatigue look like?
Access doesn’t always simply exist when a disabled person arrives. Sometimes it has to be arranged.
That might mean contacting an organisation beforehand to explain an access requirement. It could involve requesting a reasonable adjustment, answering questions, checking arrangements, correcting assumptions or following up when something hasn’t happened.
Anticipate
Thinking ahead about potential barriers.
Explain
Describing your needs and what would help.
Request
Asking for adjustments or communication support.
Negotiate
Clarifying, justifying or finding a solution.
Remind
Following up and checking arrangements.
Adapt
Findinga way when things aren't in place.
Then there’s the recovery time. Then doing it again somewhere else. And again. One interaction might not feel particularly significant. The problem is having to repeat this process across healthcare, education, employment, travel, social activities, appointments and everyday life.
Over time, this creates a form of access fatigue.
It isn’t necessarily the fatigue associated with someone’s disability or health condition. It is the additional load created by having to continually manage the environments around them. There is cognitive work involved in anticipating barriers, communication involved in explaining what you need, emotional work involved in deciding how much personal information to disclose and how firmly to challenge something when it goes wrong.
Sometimes there is practical work involved in finding an alternative when access cannot be provided and all of this can happen before the person has even begun the activity they actually came to do.
When access depends on self-advocacy
There is an uncomfortable contradiction here. We quite rightly want deaf and disabled people to feel empowered to communicate their own needs and make decisions about their own access but empowerment should not become responsibility.
If someone only receives appropriate access because they are confident, knowledgeable, persistent and prepared to repeatedly advocate for themselves, the environment isn’t particularly accessible, It has simply become navigable for people who are good at navigating it.
Two people with very similar access requirements can therefore have very different experiences. One person might understand their rights, know the terminology professionals use and feel confident challenging a decision. Another might not.
Someone might usually be a very confident self-advocate but simply not have the capacity to do it that day so access shouldn’t depend on who has enough energy left to fight for it.
Access fatigue and communication access
For people who are deaf, deafened or hard of hearing, this additional work can be particularly visible around access to communication.
Communication preferences vary considerably between individuals. One person may use BSL (British Sign Language). Another may rely predominantly on lipreading and spoken English. Someone might use captions or speech to text. Others may use hearing technology alongside visual communication, or require a particular communication professional depending on the situation.
There is no single solution that works for every deaf person Yet getting the appropriate communication access can itself require considerable self-advocacy.
It might involve asking whether captions will be available, checking that a BSL interpreter has actually been booked, explaining that automatic speech to text isn’t appropriate for a particular situation, asking people to face you because you are lipreading, explaining that wearing hearing aids doesn’t mean you can hear everything being said, clarifying that knowing some British Sign Language doesn’t necessarily mean BSL is your preferred language or explaining what communication support you need to participate fully.
Then you arrive at the appointment, meeting, training course or event and discover that the information hasn’t been passed on.
So you explain it again.
Access fatigue and listening fatigue are not the same thing
It is useful to distinguish access fatigue from listening fatigue, particularly when we are talking about deaf, deafened and hard of hearing people.
Listening fatigue can result from the sustained concentration and cognitive effort required to follow communication.
Someone may be combining residual hearing, hearing technology, lipreading, facial expressions, visual cues and context to piece together what is being said. Even when they appear to be following a conversation successfully, the amount of concentration involved can be significant.
Access fatigue is different. It can begin before the conversation has even started.
It is the work involved in trying to ensure that communication will be accessible in the first place. Deaf, deafened and hard of hearing people experience both.
A deaf person might spend considerable energy arranging appropriate communication access, explaining their needs and checking that everything is in place. They then have to use further cognitive energy to participate in the conversation itself.
Understanding that distinction is an important part of good Deaf Awareness.
Deaf Awareness isn’t simply about knowing a few communication tips. It includes recognising the effort involved in communication and understanding that responsibility for successful communication shouldn’t continually fall to the deaf person.
When "I'll manage" becomes the easier option
There is another complexity to access fatigue.
Disabled people can become extremely skilled at adapting to inaccessible environments.
A deaf person might lipread when captions aren’t available. They might use speech to text on their phone, carefully position themselves in a room, ask someone afterwards what they missed or use context to fill in the gaps.
Someone with another disability may develop an entirely different set of strategies for navigating inaccessible spaces, information or processes.
From the outside, everything may appear to have gone well but managing a barrier isn’t the same as removing it and getting through something isn’t necessarily the same as having equitable access to it.
Over time, people can start making calculations.
Is this important enough to explain again?
Is it worth correcting them?
Can I manage without the adjustment this once?
Do I really want another conversation about my disability?
Sometimes the answer becomes no.
A person may accept an adjustment that doesn’t really meet their needs. They may rely on a partner, friend or family member. They might piece together missing information afterwards.
They might simply say:
“It’s fine.”
That can easily be interpreted as evidence that the adjustment wasn’t really necessary. In reality, advocating for better access may simply have become more exhausting than managing the barrier.
The problem with "just ask"
Organisations often encourage disabled people to contact them if they require an adjustment.
On the surface, this sounds inclusive.
Sometimes asking is unavoidable because access is individual and organisations cannot anticipate every person’s requirements.
But “just ask” isn’t an accessibility strategy on its own. It places the first action back onto the disabled person.
If every appointment, event, meeting or service requires someone to identify themselves, explain their disability, describe the barrier and negotiate a solution, the cumulative workload can become substantial.
The better question is not simply:
“How can disabled people tell us what they need?”
It is:
“How much work does our organisation require someone to do before they can access what everyone else can?”
Reducing the burden of self-advocacy
Self-advocacy should remain available to disabled people. People should have agency over their own access and be able to communicate their preferences, make choices and challenge assumptions.
The goal isn’t to take that voice away. It is to make sure people don’t have to use it constantly just to participate.
Organisations can start by looking at the points where unnecessary self-advocacy is being created and when somebody communicates an access requirement, listen carefully and record it appropriately.
Where information can appropriately be shared, don’t make someone repeatedly explain the same requirement to different people within the same service. Provide clear information about accessibility and communication access before people have to ask.
If a reasonable adjustment or communication professional has been agreed, have processes in place to make sure it actually happens. Don’t assume that one method works for everyone with the same disability and don’t interpret someone’s ability to cope without an adjustment as evidence that the adjustment isn’t needed.
For deaf, deafened and hard of hearing people, good deaf Awareness can make an enormous difference. Understanding different communication preferences, BSL, lipreading, captions, speech to text and the range of communication support available means the deaf person doesn’t have to begin every interaction by educating everyone else.
Accessibility shouldn’t depend upon deaf and disabled people becoming experts at navigating inaccessible systems.
Self-advocacy can be powerful but perhaps one measure of genuinely good access is how rarely someone is forced to use it.
About Lipspeaker UK
At Lipspeaker UK, we believe communication support should always start with the individual. We work with organisations across the UK to provide professional communication support, training and consultancy that helps create more accessible and inclusive communication for deaf people.
If you’d like to discuss your communication support requirements, we’d be happy to help.
Frequently Asked Questions
Access fatigue is the cumulative mental, emotional and practical exhaustion that can result from repeatedly having to manage your own access needs.
This can include explaining requirements, requesting reasonable adjustments, correcting assumptions, checking arrangements, reminding people about agreed adjustments and finding alternative ways to participate when access isn’t provided.
It is the repeated nature of this work that can make it particularly tiring.
Fatigue can be directly associated with a disability or health condition, pain, medication or the additional physical and cognitive effort involved in everyday activities.
Access fatigue describes the additional work created by barriers and repeatedly having to advocate for access.
A person can experience both.
Listening fatigue is tiredness associated with the sustained cognitive effort required to listen to and process communication.
For deaf, deafened and hard of hearing people, following a conversation may involve combining hearing, hearing technology, lipreading, visual information and context.
This concentration can be tiring even when the person appears to be following the conversation successfully.
Listening fatigue relates to the effort involved in following and processing communication.
Access fatigue relates to the work involved in securing, explaining and managing access.
For example, a deaf person may experience access fatigue from repeatedly arranging captions, speech to text or another form of communication access. They may then experience listening fatigue during the conversation itself.
The two are different, but they can occur together.
Yes. Lipreading requires considerable concentration and doesn’t provide complete access to everything that is spoken.
A person who lipreads may also be using context, facial expressions, residual hearing and other visual information to understand a conversation.
This additional processing can contribute to listening and communication fatigue.
No.
Deaf, deafened and hard of hearing people have different communication preferences.
Some people use BSL (British Sign Language) as their first or preferred language. Others primarily use spoken English and lipreading. Some use captions, speech to text, hearing technology or communication professionals. Many people use a combination depending on the situation.
The most appropriate approach is to ask the individual about their communication preferences rather than assume.
They can make communication more accessible for some deaf and hard of hearing people, but preferences and requirements vary.
Captions or speech to text can provide visual access to spoken information and reduce reliance on hearing or lipreading alone.
However, the quality, accuracy and suitability of different systems vary. Automatic captions, for example, may not provide sufficient accuracy for every situation.
There can be many reasons.
Someone may have experienced previous requests being ignored, questioned or misunderstood. They may be tired of repeatedly explaining themselves or may feel that managing the barrier requires less energy than challenging it.
Someone not requesting an adjustment should therefore not automatically be taken as evidence that they don’t experience access barriers.
Good Deaf Awareness reduces the amount of explaining and correcting that deaf people have to do themselves.
This includes understanding that deaf people have different communication preferences, knowing how to communicate effectively, recognising the limitations of lipreading and hearing technology, and understanding different forms of communication access.
It also means recognising that successful communication is a shared responsibility.
Start by asking people about their communication preferences and then acting on the information they provide.
Make communication access part of planning rather than something considered only when a problem occurs. Record agreed requirements appropriately, provide accessible information and ensure staff understand what has been arranged.
Most importantly, look at the process from the individual’s perspective.
How many times are they being asked to explain the same thing?
How much knowledge are they expected to have?
How many people do they have to contact?
How much effort is required before they can simply participate?
Good access doesn’t remove someone’s ability to self-advocate.
It reduces the number of times they are forced to.