The Differences In Lived Experiences
When we speak about the “lived experience” of persons with disabilities, we sometimes talk as though it is one common experience. It is not.
Even among people with the same disability, our daily lives, levels of independence, support systems and challenges can be very different. Those differences matter, particularly when we are asked to share our lived experiences or when organizations rely on those experiences to make decisions about accessibility.
As a person with a vision impairment, I live independently. I manage my own life and seek assistance from sighted people when I need it. Other people with vision impairments may also consider themselves independent but live with a sighted spouse or partner who provides assistance with some of the everyday tasks that are difficult or inaccessible without sight.
Still others may require substantial assistance and be dependent on family members, support workers or other sighted people for many aspects of daily life.
All of these are legitimate lived experiences of disability. But they are not interchangeable.
Consider technology.
For someone living independently, an inaccessible website, mobile application, household appliance or software update can create an immediate problem. There may be nobody sitting nearby who can simply look at the screen, identify an unlabeled button or complete a task that a screen reader cannot handle.
We have to find another way.
That might mean learning new technology, troubleshooting accessibility problems, contacting customer support, finding an accessible alternative or eventually asking someone for assistance. The important point is that the accessibility barrier becomes ours to confront directly.
A person with a sighted spouse or partner can encounter exactly the same inaccessible technology. The difference is that assistance may be readily available. A sighted partner can sometimes bridge an accessibility gap that technology has failed to address.
For someone who is substantially dependent on sighted assistance, certain accessibility barriers may be experienced differently again. If another person routinely performs a particular task, the person with the disability may have less direct contact with the inaccessible technology involved.
This does not mean that one person has a “better” or more authentic disability experience than another. Nor does independence make one person’s views more valuable.
It does mean that our circumstances shape what we encounter.
That distinction becomes important when lived experience is used to guide accessibility policies, products and services.
Suppose a person with a vision impairment says that a particular service is easy to use. An important question is: easy to use under what circumstances?
Did the person complete the entire process independently? Did a spouse read information from the screen? Did a support worker fill in part of a form? Did someone else perform the task altogether?
None of these circumstances invalidates what the person experienced. But without understanding the context, we may draw the wrong conclusion from that experience.
A service that works well when a sighted partner is available is not necessarily accessible to a person living alone.
Likewise, the experience of someone who has spent years developing advanced technology and independent-living skills cannot automatically represent someone who has different skills, resources or support needs.
This is why we should be cautious whenever someone claims to speak for “the disability community.”
There is no single disability experience.
Our experiences are influenced not only by the nature of our disabilities, but also by where and how we live, the technology we use, the skills we have developed, our financial circumstances, the people around us and the amount of assistance available to us.
Even independence itself is not absolute. A person can live independently while still requiring assistance from time to time. Asking for help does not erase independence. The more useful question is whether people have meaningful choices about how they live and whether the world around them enables them to carry out ordinary activities as independently as they wish.
This should also influence how organizations conduct consultations with persons with disabilities.
It is not enough to invite one or two people with disabilities into a room and say that lived experience has been represented. Consultation should include people whose circumstances differ: those living alone, those living with partners or families, those receiving formal support, people with varying levels of technology experience, and people with different degrees and types of disability.
We should also ask more specific questions.
Can you perform this task independently?
What barriers do you encounter?
What assistance do you require?
Would you be able to complete the same task if that assistance were unavailable?
Those questions reveal something that the broad phrase “lived experience” can sometimes hide.
There are experiences within the experience.
Recognizing those differences should not divide persons with disabilities into categories of who is more or less independent, capable or deserving of being heard. Instead, it should make our conversations about accessibility richer and more accurate.
Every lived experience contributes a piece of the picture.
But no single piece is the whole picture.
If we genuinely want to understand how persons with disabilities function in everyday life, we need to listen to a range of voices and, just as importantly, understand the circumstances behind those voices.
Only then can lived experience become what it is supposed to be: not a convenient label, but a meaningful source of knowledge for building a more accessible and inclusive society.
I deliberately framed the differences as different contexts rather than different degrees of legitimacy. That makes the argument about independent living and technology stronger without suggesting that people who rely heavily on assistance have less valuable lived experience.
I’d like to leave you with this for your consideration.
The image depicts three scenarios involving people with vision impairments accessing digital information and services.
In the first scene, a person sits independently at a computer terminal, with a white cane resting beside them. They are attempting to navigate a website displayed on the screen, illustrating the importance of accessible and inclusive website design.
In the second scene, a person with a vision impairment sits at a computer terminal with their guide dog resting beside their chair. A sighted partner sits nearby, explaining the information displayed on the screen and assisting them with navigating the website.
In the final scene, a sighted person assists a person with a vision impairment by completing an online form on their behalf. The scene demonstrates how inaccessible digital forms can create barriers that require people to rely on assistance from others.
Together, the three scenes highlight different experiences of accessing digital services and emphasize the importance of designing websites and online forms that allow people with vision impairments to participate independently and equitably.
Image = A hand turns a light wooden letter block above a row of blocks, changing the word ‘LIVE’ to ‘LIFE’ against a clean, pale background.
To learn more about me as an award winning sight loss coach and advocate visit http://www.donnajodhan.com