Good Grief: Should We Grieve Disabilities–And What Can We Do Instead?

Hello readers,

I hope everyone had a happy Labor Day filled with fun and relaxation. Now back to the grindstone, or the blogosphere as the case may be. This is the first topic I had on the docket for September, and though it might seem a bit odd, I think it’s one we need to address.

I got the idea for this one after seeing a particular article floating around Facebook. The article’s author has a young daughter with Down Syndrome. She claims that had she known her daughter would have this disability before she was born, the mother would have had an abortion. She also believes every woman should have the right to choose, especially if the baby will be born with disabilities. Now, I’m not here to argue about abortion. You guys know I’m pro-life, even and especially for babies with disabilities (and if you didn’t, well, you do now). I don’t judge people who abort–or at least, I do my best, since I’m increasingly learning that judgment is human nature. After all, for every thousand mothers, there are a thousand reasons. Does that make it okay? In my estimation no, but there you go.

Even though I don’t agree with abortion, this perspective did raise a question in my mind. I was thinking about parents who abort because they’ve been told their baby will have Down Syndrome or another disability. In a lot of those cases, the diagnosis is a done deal–there is little to no chance the doctor made a mistake, in other words. And I thought, one of the reasons those parents abort, might be because they’re grieving. Not grieving in the traditional sense, but grieving all the things they have been told, or believe, their child will never do or be.

Now, you guys know that as comedian Brad Stine once said, this is where I (usually) start getting a little testy. After all, who your child will grow up to be and what he or she can do is not ultimately a doctor or therapist’s decision. Furthermore, I hate the idea of people grieving disabilities, as if people with them will never amount to anything and are in fact already dead. Do this with me, all right? Take disability out of the equation for a minute. I’m going to give you an example that the Disability Services director of my university gave me when he was explaining why this “grief mentality” is so harmful. (This was pre-paradigm shift, when I still thought of disability in very medical, clinical, and negative terms, even relating to myself).

Anyway, he says to me, “Imagine I’m your doctor, and I just told you that you’re pregnant. But I also told you you’re going to have a girl.”

“Great!” I said. “I’ve always wanted girls.” (Still true, by the way, although yes, boys are wonderful, too).

“Yes, but what if I then said, you need to consider your options here? After all, your girl will grow up with wage gaps where she works. Men may disrespect her. She may develop eating disorders or get raped. She might end up a teen mom. Is that the kind of future you want for your kid?”

That’s nuts, right? Yet, when a doctor says the same types of things–except, substituting Down Syndrome or hydrocephalus or whatever, most people think it’s okay. It’s not–but it occurred to me recently: are the emotions okay?

Sometimes when you’re an advocate–even mainly on the blogosphere like me–you have to step back from your own emotions and take a hard look at someone else’s. Recently, I’ve been stepping back and taking a look at the emotions of parents, expectant or already holding that baby or toddler, who’ve been told,

“I’m sorry. Your child will have Down Syndrome.”

“I’m sorry. Tests indicate your child has cerebral palsy.”

“I’m sorry. There is fluid in your child’s brain. Our experience treating this condition indicates he probably won’t live more than six years.”

No matter how you slice it, no matter how hopeful you are or what treatments you use, there is going to be grief, right? I think there must have been for my parents, because back then they didn’t know what CP would entail for me. In the 29 years since then, there has been grief for us all. I have grieved because I don’t have the physical freedoms other young adults do. I grieve because I want so much to be active, and try really hard, and yet I will never be as active or fit as some women. There will be, and are, tears. There will be anger, and sadness, and fear. There is no getting around it–no good attitude that will make things okay, no Prozac that will lift your serotonin levels enough to pretend your child won’t struggle, and may not be able to do basic things.

So I’m not going to censor those emotions. I’m going to go on record and say it is good and right to feel them, if and when you need them.

Now, a lot of people, especially parents, might disagree with me. That is, they think if they go through a grieving process, they’re saying the child is or will be “less.” That they are, in a way, speaking prophecies of doom over that child. I get that, because in a lot of cases, that’s exactly what happens. There is so much focus on the grieving process, it takes over. In fact, many doctors and other experts tell parents not to be optimistic–that if they show any hope for their child’s future, they’re in denial. If you ask me, that’s a disgusting attitude, and I wish all these experts would get over themselves, already.

So I guess the only conclusion I can come to is: disability is natural, but so is grief–in certain doses and packages. That is, I’m not going to censor anybody for grieving what they know their kid won’t do or can’t do right now. But I will speak out against staying stuck in grief mode. It’s bad for the person with a disability, because it teaches them to go through life with a “poor me” outlook. But it’s also bad, even worse, for that person’s loved ones, because it leaves no room for hope. It leaves little room for progress or change. For example, let’s say that Eamon has Down Syndrome. His speech isn’t clear, but at the end of his kindergarten year, his teachers and speech specialist report that Eamon’s speech has improved 20%. The optimistic parent says, “Yes! Let’s keep going!” The grieving parent says, “That’s not enough. He’ll never talk as well as the other kids can.” And yeah, I know we all have days when having, or living around, disability sucks. But–and I’ll be frank, because I’m talking to myself too–if we stay there, we’re the ones who suck.

So yes, grieving is good. Go through that process as you need to–and get professional help from a therapist, clergy member, whoever, if you like. But how should you move out of the grief process? I’m no professional, but I’m going to try to give some stages, just like there are stages of grief (denial, anger, sadness, bargaining, acceptance).

1. Groping. Okay, so you have your child. You have a diagnosis. You’re ready to seek treatment and you know you’re ready to cheer that kid on from now until Doomsday, if it comes to that. But maybe you’re overwhelmed at what your doctor said. Maybe the treatment options boggle your mind–or conversely, there aren’t enough where you live. This is what I’ll call the Groping stage. This is where you sort through what you’ve been told or learned, and decide what to keep and what is detritus. (That may change as the child ages; I’m going to clarify that you may go through these stages a lot).

2. Grouping. This is where you start seeking support from therapists, teachers, loved ones, friends, and so forth. Your child will thrive not only because of you, but because of a strong support network whose members understand he or she is a whole person with dreams, goals, brains, a heart, and potential. I was fortunate enough to have that, and so I push hard for others to get it, too.

3. Getting and Giving Grace. This is what happens when the experts won’t listen, the treatment doesn’t work like you thought it would, or to be honest, your kid is driving you batty. Certainly, this can cause anger and sadness reminiscent of initial grief. Again, do not stay stuck there. Give yourself some grace. Say, “Okay, now we know one way that won’t work.” Give yourself grace for thinking things like, “I wish I could just fix him!” You can’t, but you’re not a horrible parent for thinking that. And give other people grace, too–yes, even those “experts” who say stupid things like, “She’s not really autistic, because she makes eye contact. She just needs a good spanking.” (Well, okay. Before you give those people grace, you might want to give them a good piece of your mind–and pray a flowerpot conks them in the head. Just kidding. Sort of).

4. Gaining Ground. This is the stage where you look at how far you’ve come and pat yourself, and your child, on the back. This can happen because you got through a day without a meltdown, because your child wrote his name or used the toilet, or because your child, who the experts swore could not function at school, just brought home straight A’s. Celebrate! (And, if you want, give the experts a big, “Nyah-nyah-nyah-nyah-nyah!”)

5. Glowing. You may never be able to say, “I planned to have a child with a disability.” You may never say, “This is the life I want for my kid.” But when you can look at him or her and say, “My child is perfect”–and mean it, not just as a sappy inspirational platitude–that’s when you get to glow. And if you’re a person with a disability and can say that, you can glow, too. Of course, not every day is a glowing sort of day–but I hope we’re all getting there.


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