What Not To Say When a Person Loses Their Disabled Family Member

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Upon seeing the news that Luke Siegel has passed away today, an all too familiar lump rose to my throat. I was flooded with memories of losing my disabled sister when she was a young teen and I was a young adult.

Many of us in Lubbock knew about Luke, because his parents tirelessly fought to raise awareness of the dangers of traumatic brain injury. I think it's safe to say that we were all rooting for him.

I browsed through many well-intentioned and well-meaning comments. And while I am sure his parents are grateful for the outpouring of love, I'd like to take this opportunity to suggest some things to say, or not say, when you speak to someone who has lost a disabled family member.

I attempted to google this subject and could only find ways to talk to disabled people about death. I found nothing about how to talk to family members who lose a disabled family member. That's very telling to me. I can only give advice based on my personal journey.

"They are healed/walking/smart/whole in heaven!" is a comment that I would firmly put in the "do not say" pile unless the parent or family member says it first. To some of us, we see that as a way of saying that our loved one wasn't good enough as they were in life, that their existence was somehow flawed or an error. Many of us who have lived this experience are at peace knowing that no life experience is "better" than another, that they are simply different experiences, and that all experiences are equally valuable. Our loved one was capable of happiness, joy, and love. For many of us, that's plenty.

"What happened?" or "How did they die?" Well, that's really not any of your business. In Luke's case, he passed of COVID-related pneumonia, so we do know. Disabled children, particularly those with TBIs, can have quite a bit of difficulty "coughing it up." But it's terribly rude to ask a loved one the ends and outs of everything that happened. When my sister died, the cause of death was literally three lines long. Their bodies tend to have a laundry list of abnormalities so any infection or injury can cascade into multiple system failures.

"Well, I bet you must feel some relief" No. Just No. Don't ever say this. Assisting and caring for a disabled person can be a tremendous challenge both physically and mentally. But there is no relief to be had. I guarantee that person is still "carrying" their loved one forever, as am I. This comment just heaps guilt on top of grief and that is a very dark place to be.

So what can you say instead? Fair warning: it's easy to say but it is a promise you should keep.

"What can I do for you?" or "How can I help?"

We might just need someone to cry to, vent to, have an existential crisis around. They may need actual material or financial help. In time, they may need someone to help donate their loved one's equipment and personal items. Give that last one some time, there's no hurry.

Remember, disabled people are just that, people. Be courteous, be kind, and just be there for the people who lose their loved person.