Words Matter: Making sense of all the different terminology as a parent carer (2/3)
- Helen Rutherford
- Mar 23
- 4 min read
In our second blog, Dr. Joanna Griffin writes from a parent carer perspective on the language surrounding disability, both in her personal life and in her work. Here, she shares her thoughts on how words shape experiences for families like hers.
The parent carer ‘journey’
When parents have a disabled child they suddenly become part of a wider disability world which for many is unfamiliar and at times, overwhelming. In my experience there can be different stages to the parent carer journey. This may involve moving from overwhelm in the early years to becoming more aware of disability issues, feeling better able to advocate for your child and eventually being a disability ally.
This isn’t always an easy process though, as we also become more aware of ableist attitudes and the difficulties our child may face in society due to lack of accessibility, adaptations and understanding.
The terms that people use (and those used by the people around us) may change over time, and their relationship to these terms may also shift.
I certainly feel more aware of the disability terminology now than I did when my son was first born 18 years ago. I have more awareness of how groups may feel about certain terms as well as where there is disagreement. But I also acknowledge that I’m still learning and part of the reason for these blogs is when Helen contacted me regarding my use of the term ‘special needs’ on the Affinityhub.uk website (which signposts to emotional support for parent carers). I used these words as I felt parent carers (my target audience) would be familiar with this term. We are surrounded by it, particularly in education settings, and in my discussions with other parent carers it is often used as a helpful ‘catch all’ phrase to include those with additional needs, different diagnoses and/or disabled children. However, I hadn’t fully anticipated the dislike for the phrase by some disabled adults. I’m grateful to Helen for raising this with me and leading to a very useful discussion about the words we use and the power they hold. Although I still use the term on the website (for parents to find the site) I am also more conscious about how they can be received by different audiences.
Fear of using the ‘wrong’ term
I think problems can arise when people are fearful of using the ‘wrong’ term, so they end up not talking about things that need discussing. I would always welcome an open, constructive debate and I accept that people have different views. It’s important that people aren’t shamed for using the ‘wrong’ language (it’s usually an honest mistake). That doesn’t mean that we never challenge the use of certain words or phrases. But I believe this can be done in a way that harnesses learning for all.
Different words in different contexts
Parents of disabled children (or children with special educational needs) can become inundated with new and unfamiliar terminology once their child is identified as having additional needs or being disabled.
The language used can be different depending on the service and the person with whom they are interacting.
For example, in the medical world terms, such as ‘handicapped’ may still be used that can be jarring when used in a report. How professionals talk to parents about their disabled child very much depends on their (the professionals’) own relationship with disability. It’s a useful practice for practitioners to undertake CPD in this area. How a diagnosis is presented to parents can set the tone for the whole family’s relationship to it. Following guidance on sensitive discussions is key. (See document for professionals on parent carer wellbeing on the Affinityhub.uk website here).
In the educational world the term SEND (special educational needs and disabilities) is used and a distinction made between ‘special educational needs’ and ‘disability’. For example, some people may have special education needs and not be classified as ‘disabled’. Vice versa, someone can be disabled and not have special educational needs. The catch all phrase SEND can be useful but of course any simplification in language can also mean that nuance gets lost.
There can be different terms used based on where you are in the world and sometimes conflicts between ‘official’ terms and those preferred by people with lived experience. For example, ‘intellectual disability’ is commonly used in research but people with lived experience in the UK have expressed a preference for the term ‘learning disability.’ There is added complexity as in North America the term ‘learning disability’ is used for what we, in the UK, would call a learning difficulty (e.g. dyslexia, dyscalculia).
There are also definitions which may, or may not, lead to accessing certain support. For example, a diagnosis of autism and ‘challenging behaviour’ (some people prefer the term ‘behaviour that challenges’) may lead to a referral to Short Breaks via the Local Authority. In other areas it may be whether they have an Education Health and Care Plan.
There can be differences in preferred terminology by disability as well, for example:
Scope (disability charity) outlines the social model of disability and prefers identity – first language ‘disabled person’
Mencap (learning disability charity) uses person-first language ‘person with a learning disability’ . Further info here: https://www.mencap.org.uk/learning-disability-explained/communicating-people-learning-disability. The ‘R’ word: https://www.mencap.org.uk/advice-and-support/bullying/words-matter
National Autistic Society outlines different terms as well as ones to avoid https://www.autism.org.uk/contact-us/media-enquiries/how-to-talk-and-write-about-autism
Combined with the above differences there can also be strong, differing, and understandably emotive, views across the disability and neurodiversity communities.
No wonder we sometimes feel overwhelmed coming to terms with all of this guidance. Parents have to learn to navigate all of this new terrain, with its quirks, acronyms and gatekeeping alongside parenting and fighting for limited support. Furthermore, we have to ensure we look after our own mental and physical health and wellbeing in order to support the whole family.
Disabled people and their families together
Witnessing negative attitudes towards disability, including stigma and discrimination, can be damaging to the whole family. By family carers and the disability community working together I believe there is greater strength in challenging the ‘deficit’ disability model. Hopefully by coming together we can raise awareness and encourage greater understanding in an open and collaborative approach.
Written by Dr. Joanna Griffin, founder of Affinity Hub
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