Dori Holte, author of Voice Unearthed and Voices Unearthed, is an exception to my wariness about 'well-intended allies'. Here are some insights from her blog...

Dori Holte is a mother to a person who stutters. AND she’s cool. Before I share her excellent work (and it is, well, excellent), I want to vent my own frustrations about other types of allyship.

This is going to sound awful of me, but I often hesitate towards activist parents or spouses. We see the worst of it in horrid organizations (like Autism Speaks) when parents or grandparents go on and on about how horrible THEIR life is because they are burdened with this ‘afflicted’ child. And then they pat themselves on the back for all the great work they’ve done in curing the world.

I have heard a spouse leader say to a room full of hundreds, “Spouses are just as important here” (and I nearly got up and left).

Are allies necessary and good and important? Yes. Are they JUST AS important? Not in this space. If every spouse left the room, we’d have been the same org. But if all of us left the room? Then it would no longer be the same org.

So, long story short - I’m wary.

But at the same time, I find parents and spouses and close loved ones to be some of the best advocates, if they can platform the voices of others, and fight for what is actually best — not what they think is best in their opinion. And they do not get in the way. The setbacks hit them, yes, but it is often easier to find fighting spirit for someone else than it is for yourself, isn’t it? True for me, at least…

Dori is one of those good ones.

I wanted to share some excerpts from her blog, which you can find at any of the below links:

From “Do They or Don’t They Need Fixing?” on 13 Nov 2013

What is it we are trying to say when we say “they don’t need fixing!?”  Certainly that we will accept, support, and love them no matter what.   But I think it’s confusing to both parents and children when we insist that they don’t need fixing at the same time we are putting great amounts of energy into finding resources to address the issue. 

From “Keeping My Fingers Crossed” on 12 Feb 2014 (this one is EXCELLENT - and also, almost 10 years old….)

While I believe there are some children out there who feel that speech tools were helpful, there are just too many who found them to impede their overall progress in life. I also know that there are children who have benefitted tremendously from their interaction with speech therapists over the years. But too many have not and until this changes, I will continue to write about the bourgeoning flip side of this scenario.

The newsletters from support organizations exude hope and reasons to celebrate, sharing stories of families who are satisfied with the therapy they’ve experienced and adults who have led extraordinary lives in spite of their challenges with stuttering. That perspective is well covered. But the field can’t keep pretending this picture is reflective of everyone’s experience and inclusive of the current state of affairs. They cannot be afraid to acknowledge, embrace, and address the shortcomings and uncertainties that permeate treatment options for children who stutter. I know there are individuals and professionals out there expressing their concerns and ready to roll up their sleeves, but the effort to marginalize these voices is pervasive and ongoing.

From “Oh! You Are Such a Good Talker!” on 18 Dec 2013

If you praise a child for fluent speech, they will get the idea that fluent speech is what “matters” to their listener. Is this really the message we want to risk sending?

I seriously cannot fathom any scenario where it would be appropriate and safe to praise a child for fluent talking. It’s just not worth the risk.

From “Is There Really a Window for Children Who Stutter?” on 17 Aug 2017 (bold is my own emphasis)

Is there really a “window of opportunity” for treating young children who stutter? We were told there was eighteen years ago.  Many parents are still told that today.  The window is supposedly widest when they’re around three, and slowly closes over the next few years. …

I know now that neuroscience is no where near understanding a child’s brain enough to verify that speech tools – or any of the therapy approaches used on young children, actually affect brain plasticity. At the same time, research done over decades has consistently told us that 80% of kids will recover with or without therapy.  So for the child who, for whatever reason, doesn’t recover – we’ve just spent almost their entire childhood telling them they talk wrong and we want them to stop doing that.  Then we spend the rest of the time trying to get them to accept their stutter – heck, even be proud of it.

Why in the world is this metaphor tossed out with so little evidence to support it? Do speech therapists have any idea of the anxiety and fear this instills in parents? Do they understand how much a parent’s anxiety can negatively impact a child?

Let’s start with “it’s okay to stutter.”  Let’s focus on building resilience, self-confidence, passion, and joy in our little ones.  Let’s surround them with non-judgmental cloak of acceptance and love and put the idea of fixing them aside.  Let’s start there and stay there.

From “It Would Not be a Frivolous Lawsuit” on 10 Dec 2017

[James] McClure uses the analogy of going to a doctor with a heart murmur. “He’s going to pack me off to the cardiologist. If he didn’t, he could get sued.” He admits that for SLPs there are no consequences for not sending a PWS who stutters to a specialist and Reitzes points out that “ the consequence is in reverse. If they do refer out, they may lose their job!” And once again in this series, litigation is mentioned. McClure states that “perhaps districts would be more inclined to hire a specialist or let their SLP make referrals if parents sued.

Reitzes [StutterTalk podcast] suggests a public campaign designed to educate parents on the reality of finding a therapist who is comfortable treating stuttering. McClure’s response is “It would be a major strategic shift to ASHA – if that was a settlement to a lawsuit. Reitzes responds with, “ We’re not talking about a frivolous lawsuit, but part of a settlement could be educating the public better about stuttering.”

From “Stop Blaming Parents and Children for Unsuccessful Therapy” on 4 Jan 2012

In response to a therapist responding to a child who no longer wants to stutter:

Ideally (in Doreen’s world), a therapist responds to this “important piece of information” by explaining the risks in attempting any therapy that incorporates teaching a child speech techniques designed to minimize and/or eliminate the stuttering behavior. These risks include silence, disengagement, poor self-esteem, and ironically, increased secondary behaviors and tension around the stuttering moments. Parents deserve to understand that while their child is using techniques that successfully eliminate or minimize stuttering moments, especially while in the clinic setting, they may also be acquiring behaviors and beliefs that can lead to a far greater handicap – some that can last a lifetime. The short-term successes can lead to long-term disaster.

Finally, an entry “Lidcombe - What’s Left?” from Dec 2020

In addition, the more recent study refers to another report in which “44% of 35 parents surveyed stated that their children displayed a negative reaction to Lidcombe verbal contingencies for stuttering.” (Packman 2007 as cited in Donaghy et.al. 2020)

Lidcombe is recommended for preschoolers because this is supposedly a time when brain development and plasticity is at its peak. It’s often called “the window of opportunity” to train the brain to not stutter. While it’s true that the brain development is extremely active during these years, we must remember that this makes children even more vulnerable to planting seeds of shame and fear because the “window” has no screen. It appears that the true benefit of Lidcombe lies in environmental adjustments that can easily happen without the inherent risks of verbal contingencies. First do no harm.