The candles are off the cake, slices served to eager children. A little girl has her fork by her mouth, a small bite of cake hovering and awaiting a response. She was dropped off to the party, so there’s no one in particular for her to ask, so her tentative voice asks no one in particular. . .
“Does this have tree nuts?”
I ask her if she’s allergic, she says she is. I ask her if she has her EpiPen and she pauses and then reveals she does not. She really wants the cake. She seems to regret asking the question.
I can’t get it out of my mind, what would I want another mom to tell my child? How can I frame this in a way that doesn’t come off as judgmental because I am not in that other family’s shoes and I don’t know what advice they follow to manage allergies? As I contemplate the situation a few things converge – food allergy awareness week, whether I’m quick to discount lay advice online, and community generated parenting advice.
First, we’re almost upon “Food Allergy Awareness Week” – I will actually be away from my own family for a few days to present at a conference in Orlando as a one-third representative of the Allergy Law Project (“ALP”). I was invited because of ALP and will be reimbursed for my air travel and will have a room provided (see, there’s my disclosures at work). That has me contemplating audience – who are we trying to reach in an awareness context – could it be diagnosed individuals as much as people who may not know about allergies except for seasonal ones?
Second, a friend has made some very cogent points about a concept floated in an ALP post where we discussed non-lawyers dispensing legal advice. She cautioned me that in law, medicine, and the like, we can’t discount the power of community information shared by informed individuals who have lived a given scenario.
Third, I’ve been reading the book “Parent Hacks” by Asha Dornfest – I pre-ordered a copy of my own but also received a review copy and Asha’s site and book have elements of empowerment and community based information that had me thinking about the tips, recipes, and more that food allergy parents share on social media and elsewhere. (I reviewed the book on Amazon, so you can see my specific thoughts there via this affiliate link.)
Does anyone recall the part in Donald in Mathamagic Land where Donald Duck is advised to tidy his mind? I’ve viewed my mind that way often – jumping to and fro – so blogging is often a way to achieve some organization.
Unrelated aside, well, aside, these things connect for me but they probably appear hodge podge to anyone else. I promise I’m going somewhere with this.
A few things I know, in relation to the thoughts above:
- Communities have power, especially through the internet, to share useful and even life saving information.
- There are awareness battles to fight within a community as well as without.
- Bringing together 1 & 2 is a matter of safe spaces, supporting one another, and cogent discourse.
When there was nowhere else for me to go, there were blogs and other forms of social media. Perhaps my law license gives me a little more ability to dig deeper into what I read, but I absolutely am sure the first place I heard about 504 plans was on a food allergy mom blog. The first book about food allergy I read was Robyn O’Brien’s The Unhealthy Truth from our local library. Who am I to discount parent based medium when it helped me so directly? Well, there’s a balance, much like when I rambled on about FTC dot com disclosures. Common sense comes into play with any information you read about online, in the news, or elsewhere – but the scaffolding we each build upon is different.
I was at a self help center “ask a lawyer” meeting and the prospective client had some bad experiences with attorneys. She wanted my advice as an attorney but not representation by anyone because of her bad experiences. I can’t fault her. The same would go for a person who had a bad experience with an allergist or professional who was not an adequate shepherd of their trust. Which all goes to say that I don’t fault people for looking elsewhere when they may have reason to believe they aren’t getting the truth from a segment of professionals. But we can’t move from one extreme to another. I wouldn’t presume to say a food was “safe” for another child, I can only know what works for our family – and yet you’ll find people posting online “we have x, y, and z allergies – is food abc okay?” and relying on the responses. Is the asker or the answerer more at fault in that scenario (if any fault were to be placed)?
We have a responsibility to share accurate information about food allergies because we live it every day, but with the appropriate caveats we can share as well as protect one another. For example, let someone know the limits of advice (“this worked for us, your mileage may vary” versus “this is how it is done”). Community message boards, forums, and even facebook can all be very effective awareness and advocacy tools but we should disclaim and warn wherever appropriate. I do see this form of appropriate disclosure quite a bit, but there are some situations where people become defensive and hostile if asked to clarify their experience or acknowledge the limits of their advice.
This leads me to thinking of my presentations next week at the FARE Food Allergy Conference in Orlando. Mary and Laurel both have conflicts and can’t attend so it was up to me to carry the Allergy Law Project banner, so to speak, and take this great chance to reach others within our allergy community to share our resources and mission. I know, however, that these are well informed individuals at different stages in their out advocacy journey and I would not presume to imply that their personal experiences are diminished in the face of the letter of the law. On the flip side, I do think I want to address how to recognize when one is maybe out of their depth and needs more resources.
Just as physicians bemoan the snake oil salesmen of the world, lawyers do get frustrated at the harm that can be done when someone gets bad advice. That said, bad advice can come from lawyers just as it comes from lay people, but professionally there are remedies for people harmed by bad advice from a lawyer. You have reason to believe a higher expertise is at play, after all. The next layer of complication though comes from giving a presentation as a lawyer, or writing an article, and the recipient changing the message or making it their own. If I talk about 504 plans or rights under the ADA, I do want people to feel empowered to advocate for themselves. I really do. But I wouldn’t ideally want them to claim some authority if they share that information with another person.
Back to the little girl at the party, a lot of this comes down to trust. Who we trust and how. Whether trust is enough – we can trust that we won’t get in an accident or we can also wear a seatbelt. We can trust that a label is accurate or we can also carry epinephrine. We can trust that a school administrator is on the side of our child’s safety or we can advocate for a 504 to supplement what are hopefully already sound school policies. What we should avoid is implying that something is a safeguard when it is just a shared experience -the audience doesn’t always have the ability to tell the difference so it is up to the speaker to relay that to the listener proactively. That is simply being a responsible person.
At the outset of any business relationship, I tell clients, there’s a point where everything is going to be great – you and your business partner get along great, you trust each other, it is simply going to be awesome. And then down the line people change and circumstances change. At that point there’s an appreciation for the operating agreement that seemed so specific and pessimistic. If you’re the one to point out to a fellow allergy parent, for example, that maybe they shouldn’t send their kid to a birthday alone and without epinephrine, you have a situation ripe for conflict. Allergy Awareness Week is a time and a chance to share information and perhaps reach people within the community who have received poor advice or who are relying on sources who are not responsible about the effect of the information they provide. People should absolutely have access to resources to represent themselves, they just shouldn’t be effectively representing someone else outside of their own sphere.
While I’m in Orlando, by happenstance, Asha from Parent Hacks will be stopping on her book tour and I really hope I can make time to go meet her because her community based website has been such an inspiration to me as a blogger. She always keeps her own voice, even if something is sponsored, because she discloses whenever a concern could be raised and is not afraid to spark discussion. I remember when she wrote about the pressure parents can feel about Valentine’s Day. She suggested that we remember what our children feel about what may simply be a Hallmark holiday. But she made no apologies for not being a fan of the day when her kids were small. She didn’t claim that her approach was better or worse, she just offered her personal insight. That is the power of blogging and community based information. Putting something out into the world without judgment but so that someone else maybe sees their own struggle put into another’s words.
I hadn’t really looked through the Parent Hacks book when my ordered copy arrived because because I’d been in the middle of some health issues at the time and everything about life and the universe pretty much managed to put me in tears. And then I saw this…
And I teared up anyway. There’s something amazing about feeling like you are friends with someone you’ve never met in person and then somehow having your life weave into theirs in something so concrete as a book you can hold in your hands. A book that is about bringing a parenting community together with tips, tricks, and “hacks” to make taking care of kids a little easier.
There’s this larger parent community with islands of compassion and support like ParentHacks.com and I think there are those islands similarly in the food allergy world in the form of in person support groups, conferences, meetings, KFA, FARE, social media groups, and more. The tone we set is important and the information we give is as well.
Like Asha, my gratitude is this community’s. I can’t wait to meet some of you next week and share my hopes for continued legal safeguards, labeling, and the strong food allergy community at large. Hopefully I’ll figure out what to do about the little girl from the party in the process – I need advice on that front for certain. Thank you to FARE for this upcoming opportunity and for embracing the independence that is at the heart of the Allergy Law Project‘s mission.