Caring for someone with Duchenne muscular dystrophy requires us to play many different, highly technical and specialized roles. We have to be a doctor so that we can fully understand our son's condition. We have to be a nurse so that we can provide the care he needs. We have to be a physical therapist, occupational therapist, speech therapist just to handle the basics like feeding and getting dressed. We have to be a research scientist so that we can understand and evaluate any clinical trials for which he might be eligible. We have to be a pharmacist so that we can appropriately combine and administer drugs and vitamins. Some of us become [Deflazacort] drug smugglers for the same reasons. We have to be a lawyer so that we can get him services like Medicaid waivers and IEPs. We have to be an accountant to keep him eligible for those services. We have to be a politician to advocate and fundraise for Duchenne research. We have to be an engineer, an architect, a mechanic just to manage the wheelchairs and other gear our son needs. We have to be a teacher, with prepared lesson plans on the nature and history of Duchenne, suitable for every age group and education level. For most of these jobs, we feel totally unprepared despite the fact that we do them all, day in and day out. After all, our only credential is called "parent."
Our society loves experts. We fetishize academic and professional credentials like no one else in human history. Somehow, we have been led to believe that the only kind of experience that counts is the kind that puts letters at the end of our names. We have created a social hierarchy that serves exclusively to make us believe that what we know personally, what we experience intimately, what we live every day isn't good enough. We can't trust our own judgement, reason, or authority; we need an expert.
Have you said it?
"I don't know. I'm just a parent."
"It doesn't really feel right to me but the doctor said we should do it."
"I see that he's unhappy at school, but I guess his teacher knows what's best for him."
"Our case manager doesn't seem to be listening to us, but I suppose she knows the system better than we do."
The bottom line is that this reliance on external sources of expertise is a cop out. We have a duty to self-advocate and no amount of academic rigor can substitute for our lived experience of ourselves. Think about it. Who is the greater authority on my physical health, the doctor I see once a year or … me? Who is the greater authority on my mental state, a psychologist I've never met with before or … me?
Another way to think about it is to ask whose interest is served. The person who stands to benefit is almost certainly the real expert. That's not my son's Medicaid case worker. It's not the special education coordinator at his school. When the person who stands to benefit from a certain action is a child, the pertinent expert in almost every situation is that child's parent. In other words, when I sit down to our son's IEP meeting, I am actually the foremost expert in the room purely by my position as his parent and primary caregiver. I know my son much better than anyone else and it is my job to make sure that his interests are served and protected. Granted, that should be the goal of every person in the room, but the bottom line is that my son's guarantor and advocate is … me.
It turns out that the only credential we really need to advocate for ourselves and our loved ones is self confidence. If we look at our hours, days, and years of experience as worthy of respect, we have done the harder half of our work already. The second half of our work is learning about the systems we are trying to navigate. For me, that is by far the easier assignment. I can read a book or two on education law. I can educate myself on the current standards of care in Duchenne. I can put together a notebook for myself with the relevant information highlighted and ready for quotation at the appropriate moment. I can prepare some speeches. And then I can put on my nice clothes, stand up straight, and walk into that meeting, a professional among equals. I will silently tell myself, "I am an expert and I deserve to have my voice heard."
And we'll get the job done.