Acquired disability and identity: one person’s reflection
Is it better to have had and lost or never to have had?
By Jo Berry · Originally published 24 November 2015
Original article
Jo Berry is a social worker with a disability. She works for disability charity Fighting Chance Australia as the coordinator of their social program LifeX and in house blog writer. She is also an ambassador for the Don’t DIS My Ability campaign. This is Jo’s second article published on the Clickablog. To see more of her work, click here.
It’s an age-old question… “Is it better to have loved and lost or never to have loved at all?”
I have often pondered whether this same debate could be put forward about being born with a disability or acquiring/developing one later in life. Some people are born with a disability, some have a traumatic accident or illness that leaves them disabled, some develop a disability gradually over time. Is it better to have experienced a fully functional body and lose capacity or never have experienced it at all? I would like to premise this by saying that I don’t think there is an actual answer to this question, just individual experiences and opinions about it…but it is an interesting debate.
Personally I have a disability that developed over time, meaning that I was once pretty much fully “able” but lost abilities over time and I have very mixed feelings on this question. On the one hand I feel so fortunate to have had the chance to run (however slowly), dance (however awkwardly), and I guess also to be “normal” (however abnormally)! I got to do so many fun things that some people, those significantly disabled from birth, never get the chance to do in the first place. On the other hand though, I miss those things terribly at times. I can remember how much I used to love things like sports carnivals, being the tallest in a group when standing, being able to stand up when I felt stiff or sore, or even simply being able to just take a shortcut up some stairs!
It was a very difficult process coming to terms with having a disability. I didn’t see myself as disabled and I hated needing a wheelchair, splints, and other mobility aids. Anyone that acquires a disability part way through their life will tell you that there are definitely elements of mourning what you’ve lost that you have to process before you can come to a stage of acceptance. It makes defining ones identity and self-esteem very complex. Another factor that contributed greatly to the way I felt about myself was the way others reacted. Some were really helpful and understanding, while others simply didn’t understand what was happening to me and were particularly insensitive or hurtful.
All that being said though, some people never get the chance to experience what it’s like to walk, run, dance, or even just the ability of see, speak or hear. They may grow up not knowing what those things feel like. That then begs the question: do they miss these abilities as much as if they had these capacities and lost them? I can’t imagine NEVER getting the chance to see, hear, speak, walk, run etc.
Truth be told…neither is better. You either get the chance to experience a fully able body but then lose abilities and miss them or mourn them, OR, you never get the chance to experience a fully able body but also therefore don’t necessarily know what you’re missing or don’t know any different. Neither is easier to accept really because in both situations you end up missing out, but regardless of this, quality of life and having contentedness in whatever situation you find yourself in often comes down to attitude. You can choose to be accepting of your situation and make the best of what you have or you can harbour bitterness and resentment which breed discontent. Those that live through an attitude of acceptance will be the real winners regardless of whether their disability is acquired or lifelong.
[Clickability update, October 2026:
People do not need to achieve a particular emotional response to deserve respect or support. Grief, frustration and changing identity can take different forms. Healthdirect’s grief information offers a current reference; practical barriers also need attention.
]
The question of whether it is better to have had and lost or never to have had at all is an interesting one for people to consider for themselves. It is also perhaps helpful to bear in mind how hard it is for people with disabilities when they are asked frequently about what their disability is and how they acquired it. Each time this question is asked by a stranger who is purely asking out of their own curiosity it makes a person reflect on what they have either had and lost, or simply never had the privilege of experiencing at all. How would you feel if it was you?
Clickability editorial update: October 2026
Decide what you want to discuss and what can remain private
You can answer a question about disability, ask why it is relevant or decline it. You do not owe a stranger a story about how your abilities changed. Explain access needs to the people who need to know without accepting a comparison with someone else’s life.
Ask for practical changes that matter now, alongside any emotional support you want. Current grief information can help frame a conversation with a suitable professional. Acceptance is not a deadline you have to meet.
Listen without deciding which experience is harder
Ask what the person wants from the conversation rather than comparing their life before and after disability. Offer a specific task or company when useful. Avoid interpreting sadness as a refusal to adapt, and respect requests not to retell a personal history.
Questions readers ask
Is there one required way to accept disability?
No. Experiences, identity and emotional responses vary.
Find support for the choices that matter now
Tell Clickability what practical assistance you want. Compare providers and ask how they will respect your pace, privacy and changing preferences.
