Presenting & Talking About Disability

This newly developed resource has been developed to give presenters concepts to think about when writing presentations, including images, stories and narratives. This is the first version of what we hope to be a living document.

We welcome suggestions and additions.

General Overview

Our understanding of childhood-onset disabilities like cerebral palsy (CP) grows with advancements in tools, science, and technology. Alongside scientific discoveries, we value insights from individuals and families living with these conditions, fostering better connections between professionals and those with firsthand experience. It’s vital to reflect on how we discuss disability and embrace diverse perspectives and understandings.

In a contemporary society, presentations need to reflect contemporary understanding of audience members, disability language, and the effects of under-reported realities like medical trauma. As the demographics of audiences change over time, how messages and meanings are conveyed need to be front of mind as the presentation material is designed or adapted. This resource is not designed to be prescriptive, rather to give presenters concepts to think about when putting together their presentations, including stories and narratives.

Photos, Images & Graphics

When selecting images and the accompanying descriptions, it is important to consider the context of the presentation. For example, the rise of hybrid models, recorded sessions (official and on personal devices) mean that many images or multimedia can be stored online and may have greater reach than the original intended audience. Furthermore, the person in the image may be an adult now which has different ramifications for consent. Below are some suggestions on how you may want to prepare and present individual stories or narratives:

  • If the individual was in the audience, would they be comfortable with what is shown and how they and their situation are described?
  • The image is chosen carefully and accurately reflects the experience that you are trying to convey for the individual and/or their family
  • Carefully consider what may be considered unnecessary details of the person’s body, life or experience e.g. extra medical devices, parts of the body, person is in a vulnerable state e.g. post op.
  • Ensure that the placement of the image only shows what is necessary for the illustrative point and does not identify any other medical or sensitive information inadvertently. E.g., photos of hips around the pelvic region.

E.g.Is the photo/image necessary? Could a diagram convey the same information?

  • When seeking permission, ensure that the person or family understands fully:
  • Which images or media is going to be included
  • The conversations and discussion points around the individual’s story or narrative
  • The intended audience, as well as potential wider audience, that it may reach
  • That the presentation may be available on an intranet or the internet
  • Consider what type of consent you have for the use of each image or multimedia. Is it specific or for general use? Does it need to be updated for current timeframe or a different presentation context or audience?
  • Consider what type of story you are telling with this image. Is it meant to be a before and after narrative? What do you want the audience to understand about the experience of the individual child or their family?

Understanding an Audience

When designing a presentation, it is important to remember that regardless of the topic you are presenting, members of the audience may have a range of experiences when it comes to that intervention, treatment or condition. Conferences and seminars are often seeking a lived experience component through their talks or events. It is not only important to consider how a person living with disabilities may respond to an image assertion or scenario, but that the same element(s) could affect clinicians and allied health professionals. Designing your presentation with a general audience in mind, at least in relation to lived experience narratives, can make incorporating these elements easier.

Here are some points to consider for the audience:

  • What elements or aspects could be potentially upsetting to people who have gone through different health systems and medical scenarios?
  • What aspects might people like to know of in advance of hearing about the scenarios? E.g., respiratory distress or mental health difficulties.
  • Is the narrative about the individual or family being told in a way that is comprehensive and meaningful? E.g., is the information conveyed in a strength-based narrative where possible?
  • Would you be happy for this information to be taken and presented to families in the community setting? Is there a strict context for what you are presenting? e.g. presenting potentially distressing but necessary information.

Communicating distressing information

If you need to present deeply distressing and challenging information, where possible, try to avoid presenting individuals “in their worst situation”. e.g., if they have a complex condition and did not have an ideal medical outcome, remember to convey why this is being talked about and the broader context of the individual and their family.

As part of the introductory elements consider adding content or trigger warnings for those in the room e.g. this presentation includes potentially distressing images and descriptions of respiratory distress

Guiding Questions

  • Is presenting a snapshot or person with associated photographs necessary?
  • What are the points that the individual is conveying over the general information?
  • How are they talked about?
  • What impression are you giving of the individual and their life experiences?
  • Is the language and images strength based and respectful?
  • Does the audience need to know this information above all else.

Final Thoughts

Looking at this list, things may seem overwhelming, especially if it’s close to the presentation deadline. There may not be time to re-examine everything or pull in extra resources. There are ways to acknowledge this, adding the permissions into your remarks. The key thing to consider is starting the process and setting a foundation for the future work, further refining the details and narrative stories.

X