Advice and development

Ask and listen: disabled people are experts in their own care

Nurse Bethann Siviter, a wheelchair user who has an assistance dog, offers her advice to nursing students on disability etiquette

Nurse Bethann Siviter, a wheelchair user who has an assistance dog, offers her advice to nursing students on disability etiquette


Picture: iStock

The medical model states disability and related problems result from mental or physical impairments. However, many disabled people prefer the social model of disability where the emphasis is on how society’s barriers obstruct activities of daily life. 

The social model suits nursing well. Nurses compare what a person can do for themselves with what they would do if they were able, willing and knowledgeable. Disability impacts people in every way across ADLs (activities of daily living). Nurses look at all those things when doing a thorough assessment.

Reflection: Could the social model help you focus on the person rather than their impairments?

Disability etiquette

Some terms for disabled people can cause offence, including ‘wheelchair bound’, ‘bed bound’ and sometimes even ‘hearing impaired’ or ‘vision impaired’. 

Someone who uses a wheelchair is a wheelchair user; many people who are hearing or vision impaired prefer the terms ‘deaf’ or ‘blind’. The best way to know the right term is to ask the person.

Never refer to a person by their impairment or aid. Do not say ‘where’s the wheelchair’ when you mean the person using the chair. Do not say ‘move the deaf lady’.  

Refer to people by their names. Different disabled people might have different preferences for how they are addressed. It is okay to say things like ‘did you see your family’ to a blind person, or ‘take a seat’ to someone who uses a wheelchair: most disabled people will not take offence.

You must respect the person as the decision maker in their care, no matter how impaired you might believe them to be. If a person is accompanied by an assistance dog, don’t make a fuss about the dog. Always respect the right of the disabled person to speak for themselves.

It is important to not touch without asking first. Do not touch, lean on or move wheelchairs, especially if the person is in it. Do not scream in a deaf person’s ear or assume you should grab the arm of a blind person. Always ask first before helping. Disabled people are experts in getting their needs met.

Reflection: How can you demonstrate respect for disabled people?

Activities of daily life

Disabled people might need help to undertake activities, but they have their own preferences. For example, some blind people might ask you to tell them where things are on a dinner tray using the numbers on a clock face as a guide, others will tell you where they want things placed. Some wheelchair users might allow you to move their chairs, some will not. You should ask and listen.

Some disabled people use the ‘spoon theory’ to remind people that independence is not what you do for yourself, it is what you choose. 

Spoon theory is about saving your energy for the things you want to do. We are taught as nurses to involve people in daily care, but someone might say ‘can you do it?’, not because they are lazy but because they want to use their limited stamina for something else. It is important that you ask what help they need before assuming what they can do, or want to do, for themselves. If independence is in what you choose, ensuring choice is critical for good care.

Reflection: What assumptions are made about disabled people and their care?

Policies and support

Your placement area will have some policies supporting disabled people, but do people follow them? Many hospitals put a large bin right next to the commode - the space which is supposed to be kept clear for a wheelchair. Sometimes the red emergency cord is not in working order. 

Would your placement area accept an assistance dog staying with a patient? Would you know what to do if an assistance dog accompanied their handler to the emergency department? Your hospital should have a policy on these kinds of issues, but do they? 

Does the policy in your placement area ensure people with autism can wait in a quieter room? Or ensure patients with a power chair can get them quickly PAT (portable appliance testing) tested for safety? Is there access to a BSL (British Sign Language) interpreter? Is patient information provided in a large print format or on coloured sheets? How well do policies support the rights of disabled people?  

Reflection: As a nurse, why is it important that you speak up for accessibility?

Advocacy

It is important to remember that you are the patient advocate. Until you are disabled yourself, you cannot understand how a disabled person feels. That is why it is important to let the patient (as the expert) guide you, so you can contribute to ensuring your clinical environment is accessible and accepting. By doing these things, you help your patient be less disabled and have much better healthcare experiences.

More information


Bethann Siviter is a nursing consultant

 

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