I debated using this as a bonus because I like my bonuses to be happy topics. However, should I wait much longer it may not be a fresh topic, so here we go.
About a week ago, a sixteen-year-old member of my church died. Her name was Lyric, and she had severe disabilities, physical and cognitive. She died because of medical complications related to those disabilities. This happens sometimes because the manifestations of certain disabilities can affect the immune system and organs. However, I’m not as concerned with the reason as the fact that Lyric died. I ask myself, what do you do or say when that happens?
You all know how I feel about books and movies killing off characters with disabilities just to further an agenda. You also know how I feel about doctors, therapists, and other experts encouraging loved ones to treat PWDs as if their lives are not worth much–as if they are already dead. But when the death is not connected to any of that–when God, or the universe, or whatever you want to say, chooses to take a person with a disability–what’s the best reaction? Moreover, how do we respond to God, or the universe, or whatever?
I can tell you, there has always been and probably always will be a part of me that questions God when it comes to people like Lyric and how they lived. When I heard she died, my first thought was, “God, why? She could’ve had a long life, a good life. She could’ve overcome, proven that PWDs are not put on earth just to inspire and then expire. What was going on?”
I’m not going to try to spiritualize this, out of respect for those who don’t believe as I do. I’m also not going to spend time on how we shouldn’t react when a PWD dies, because I think we know that. Instead, I’m simply going to suggest a few things we should do, say, and remember.
- Remember that, if they were loved (and many are) every PWD had a good life, no matter how long it was and no matter what they were or were not able to do or be in that time span.
- Remember that although experts can speculate about how long a PWD will live (they call it Disability-Adjusted Life Years), no human ever makes that decision (unless suicide is involved and I’m not even going there).
- Remember that all people have the power to inspire. A PWD’s purpose is not simply to inspire and expire.
- Some people believe persons with disabilities are on earth only to “teach us how to love.” In doing so, they reduce love–the love of God and the love of people–to a namby-pamby, feel-good, sugar-spun and fragile thing, delivered by the world’s precious wounded lambs. That is not what love is. Love is a powerful, earth-shaking, life-changing and life-giving thing. I don’t know if PWDs like Lyric have more love than the rest of us, but if they do, so what? We should be praising them, and praising _____ (fill in your blank here; mine is God) for that power. Remember to give PWDs all the credit they deserve because they earned it. No, no–they were worthy of it just by being human beings, like we all are.
- Instead of, “I’m so sorry”, meaning, “I’m sorry your loved one’s life wasn’t more,” say, “I’m sorry. What can I do to help you?”
- Say, “He/she was a strong, compassionate, beautiful person who had a unique way of reaching the world.” Focus on positive, funny, touching, and personal memories.
- Offer true comfort to the family and friends. This can be physical–as in, bringing by food, showing up for the funeral, donating something in the deceased name–or emotional/spiritual. Do not fall back on pat answers such as, “This was God’s will” or “God took His special angel home.” The intentions behind these are good but the message may fall flat.
- Focus on a good life lived, not the disability or complications died from.
Let’s give persons with disabilities a dignified, loving life from beginning to end.