By now many of you know this much about me…I’m not credentialed in any field related to special needs. And I am not a special needs parent. My child went through a few months of therapy for some mild sensory issues years ago and that experience was eye-opening. But generally speaking, my child and my life would largely be considered “typical”. So as a somewhat ignorant lay person (not a professional and not a parent), one of the most difficult aspects of being a writer on the subject of special needs inclusion, is the fear I’ll get it wrong.
To a person like me, learning the vernacular, the people-first language, and the expressions that are acceptable for writing about disability were initially really tough. Several years ago I felt a gravitational pull (i.e. a God-calling) to begin researching and writing on the subject of special needs inclusion in the church. But when I first started, I faced a pretty steep uphill climb because of my lack of familiarity with the special needs culture. And to add do that, I am not a trained or educated writer. I had a gracious friend who was a special needs professional who reviewed many of my first articles. She would (thankfully) tear my drafts to pieces. She grew so tired of explaining to me why my word choices might offend readers. Hours and edits later, I would finally land on a 500 word article to submit to a publisher. And still that wasn’t good enough sometimes. One editor (who was a Christian) spent probably an hour crafting a long, detailed email to me explaining why I was neither a gifted writer nor equipped to be writing on special needs. That was the first day (of many to come) that I seriously considered walking away from writing on this important topic. It still stings just to think about that editor’s email to me.
Now after writing almost exclusively on this subject for four years, I’m pretty confident in my writing on disability and special needs inclusion. I have immersed myself in the culture and have done so many special needs related interviews that it’s crazy (probably in the high hundreds?) And I still get it wrong. And part of the reason I get it wrong is because there isn’t perfect agreement for what is “right”. Do you describe a boy as an “autistic child”? Do you refer to him as a “child with autism”? Or should you go further and say “the child has autism as an attribute”? Those are just examples of the choices a writer has to make when describing a little boy who exhibits behaviors that a church volunteer might not understand without knowing has been diagnosed with autism. And for every article or post I write, there are a dozen (or more) other choices like this example.
While people-first is technically correct, it is an editor’s nemesis. I can’t tell you the number of times I’ve submitted an article to a mainstream publication and had a well-meaning editor change my thoughtfully crafted descriptors in order to improve word flow and word count. I’ve gotten to the place I now require any publication that I write for to allow me final review of their edits. Why? Because I hear about it when it is wrong. When the 500 word or 1500 word article gets published, when the Facebook post goes up, or when the tweet goes live…if there is a mistake related to special needs vernacular, the underlying message is missed by at least a few readers and the negative feedback starts.
Let me be honest for a minute…the special needs crowd is a tough one. And it’s a vocal bunch. These folks have to be assertive or they’d never get anywhere. But sometimes that assertiveness is intimidating to people like me. After writing on this topic for four years I can usually predict when I’ll receive a public or private rebuke about a mistake or even bigger problem with my writing. And because I’m a people-pleaser, I spend probably too much time trying to avoid that feedback before I ever hit the “publish” or “send” button. But I still get it wrong…and I still hear about it. I’m learning (slowly) to develop thicker skin. And I’m at a place now that I have enough confidence in what I’m doing to know that 99% of the time my mistake or misstatement isn’t catastrophic. But today I decided to write about this because there is a tremendous parallel for churches.
Churches are in desperate need of staff and lay people who will rise up and lead a special needs ministry. The people who have the most physical and emotional availability are nearly always people like me…parents without children impacted by disability. I love it when parents of special needs kids can and want to serve in church’s ministry. But let’s face it – if you have a child with a notable disability you probably don’t have oodles of free time to plan and coordinate a ministry! Only recently has God opened some doors of opportunity and provided me any level of income for my work. And the same is true for many special needs ministry leaders. The people called into service are good hearted folks who rarely receive fair compensation for their contribution. Remember, they have utility bills too. So it can be incredibly intimidating and discouraging when as soon as they start trying to serve families affected by special needs, they start receiving feedback on what they are doing wrong.
If you are a parent of a child with special needs either participating in a church or seeking inclusion in a church:
- Always begin a conversation with a church leader conveying appreciation for their personal investment in the ministry. Specific praise is more meaningful than general flattery.
- When the ministry leader gets it wrong, ask yourself, “Does this really matter?” or “Does this mistake reflect a heart-issue?” If correction is warranted, be sure to share something the leader is doing right before pointing out what’s wrong.
- If the ministry leader is volunteer or under paid, be especially sensitive. Most special needs ministry leaders are paid less than the wage of a grocery store cashier when you consider all the hours they invest in the ministry. So it can be tempting for them to throw up their hands when the criticism starts and opt to pursue a job that requires fewer hours, less emotional energy and provides better financially.
Okay. Hear my heart today. This post will probably garner more negative feedback than any other I have published before today on this blog. If you are a parent of a child with special needs and you found your heart rate climbing as you read this post…take a breath. I can almost hear the thoughts “You don’t understand our life and the stress we are under”. True. True. But I would argue that you need folks like me to be your cheerleader and even your conduit where you can’t. So the next time a special needs ministry leader (me included) makes a mistake, look at the bigger body of work. We’re on your side. I promise.
~ Amy Fenton Lee