Kate Lister and Tim Coughlan Student perceptions of the language of disability, deficit and empowerment Kate Lister and Tim Coughlan

Disability language controversy Disabled person (identity first/ social model) Person who has a disability (person first)

Language and identity Identity: "how a person understands his or her relationship to the world”

Language of disability in education Disabled student Student with special educational needs Student with disabilities or additional requirements SEN(D) student DAR student

…which leads to a rubber stamp effect

Asking the person first

The Open University Ranked: Nationally top 40 Globally top 500

OU students

The OU and language UK social model: refers to ‘disabled students’ rather than ‘students with disabilities’ (society is the disabling factor) Terminology includes ‘impairments’, ‘support’, ‘reasonable adjustments’, ‘circumstances’, etc. Relatively standard in the UK Lack of research or evidence that this model of language is effective or desirable OU (like most institutions) made the decision to use this language and terminology on students’ behalf without consulting them.

ASSIST A Sociolinguistic Study to Investigate Student-driven Terminology RQ1: What are students’ opinions regarding the language the OU uses to discuss disability? RQ2: What language do students use to discuss the impact of their ‘disability’ on their studies? RQ3: What model of language do students prefer the OU to use when discussing disability in the context of academic study?

Methodology Focus groups (20 participants) Discourse analysis Free discussion on learning journey (RQ2) Critique on choice of OU communication (RQ1) Discourse analysis Survey (1046 respondents) Select preferred style of OU digital communication Select preferred terminology in 1-1 engagement Statistical analysis

Stage 1 Results: Discourse analysis from focus groups Three language models emerged: A deficit model, focusing on the disability itself and the issues it causes A support model, focusing on ‘barriers and obstacles to study’ and the institution supporting the student An empowerment model, focusing on student ‘needs’, autonomy and ‘independence’, with the institution enabling and empowering the student

Stage 1 Results: Examples of language Deficit/medical model Support model Empowerment model Disability Barriers/obstacles to study Identity Condition Support needs/requirements Study needs Inabilities Additional requirements Weaknesses Problems Difficulties Strategies Help Support Tools and resources

Stage 2 Results: Overall survey analysis Most popular term: ‘Additional study needs’ (P1,2,3) Students prefer people-first language to identity-first language

Stage 2 Results: Overall survey analysis No clear preference for a single dominant model of language Language should be appropriate to the context A medical situation requires medical model language Different reactions to broadcast communication, interactive questions and co-owned artefacts Different reactions to headings and filler text

Stage 2 Results: Analysis by disability category Students with mental health and SpLD conditions preferred support and empowerment language models and were least happy with the term ‘disability’ Students with fatigue/pain and mobility conditions were most comfortable with the term ‘disability’ and were more likely to choose a medical language model than their peers

Stage 2 Results: Analysis by gender Women preferred support and empowerment language models and ‘study needs’ or ‘additional study needs’ Men were more likely to ‘leave it as it is’ (however it is) and were more comfortable with the term ‘disability’.

Stage 2 Results: What is disability to you? On the disability profile, a clear majority chose the header ‘Your circumstances’ over terms relating to disability, barriers or identity.

Next steps Internal changes in student-facing communication Analysis of any changes in disclosure, attainment, etc. Dissemination of project and results, seeking feedback Creation/dissemination of: Guide to using disability language for student-facing staff in HE Methodology report for policy makers/researchers; how to recreate the project Guide to engaging with and influencing language for students in transition from school to HE

Conclusions Definitions and perceptions of disability change from person to person and group to group Context matters: students preferred language that was appropriate for the context to an overall model Participation matters: asking students their preferences has been an extremely valuable exercise

Thank you Kate Lister, Tim Coughlan Institute of Educational Technology The Open University, UK www.open.ac.uk kate.lister@open.ac.uk