Little Lobbyists Ambassadors:
Guidelines and Tips for Writing, Speaking, and Advocating
We are so happy that you are interested in sharing your family’s story to advocate for children with complex medical needs and disabilities. Over the past two years we have learned some lessons about how to be more effective advocates when writing op-eds, speaking at public events like rallies and press conferences, doing interviews on TV, or advocating in general.
When identifying publicly as a representative of Little Lobbyists we ask you keep the following guidelines in mind.
We believe in the power of stories to change hearts and minds. Your voice matters; and we encourage you to find your voice and share your story.
To maintain credibility, please do not embellish, or go into details about topics or policies you’re unsure about. It’s always best to do your research ahead of a speaking event or interview, but it’s always okay to say you don’t know something! You’re not expected to be a policy expert, just be an expert on your child. We are all learning together.
Be yourself and tell your story.
Be civil and respectful at all times.
All interactions on behalf of Little Lobbyists, including messaging and tone, must be kept civil and family-friendly. Because we encourage active participation from children, all activities with and on behalf of Little Lobbyists must be family-friendly in nature, including language and behavior. Please be respectful and polite.
The Little Lobbyists are a non-partisan group. We have members from red and blue states and we believe the welfare of our children should not be a partisan issue. While it is okay to be (politely) firm when advocating for what our kids need, when you encounter a difference of opinion, try your best to seek common ground. When it comes to our kids, we actually have a lot in common — we all love and want to protect our children.
If you’re speaking at an event or on TV/radio/podcasts/etc., be respectful of the messaging and time limit the organizers provide.
If you’re sharing on social media, do not engage the trolls. It is not productive, and your time and energy is better spent on other interactions instead.
Help everyone get to know and love your child.
Always talk about your child as a child, first. You love your child and know what’s great about them already, but your audience does not – yet! Mention your son loves blocks or your daughter loves dinosaurs. If your child loves school or a certain movie or playing with friends, talk about it. This helps your audience get to know more about what makes your child special and shows what your child has in common with other kids . A sentence or two can go a long way towards making your child more relatable as a person and less like a statistic.
If you are comfortable, share your child’s name, age, and photos. Your kid is cute! Pictures make it impossible to ignore the real faces of who we’re fighting for. If you’re speaking publicly it is almost always appropriate to bring your child (if you and your child are comfortable doing so). However, you know your child best so it’s okay to leave them home as well. Putting names and faces to the people affected by health care, education, and disability rights issues is the secret to our success.
Words matter.
Avoid using terms that put disability in a negative light. For example, we avoid the term “medically fragile” because we want to emphasize that our kids are fighters. Instead, we say “child with complex medical needs and disabilities.” Similarly, we avoid the term “wheelchair bound” and favor “wheelchair user” instead, since our children’s wheelchairs facilitate their independence. We avoid terms like “normal” since our kids are perfect the way they are, not abnormal. A term like “not typical” conveys that there’s a difference without putting a negative spin on those differences.
We use the term disabled instead of “special needs” for many reasons. Disability conveys legal protections, whereas special needs does not. For many disabled adults (and children) being disabled is part of who they are; it is something to be proud of not hidden.
Look to the disability community for guidance. While we all want to be great parents, remember the real experts on what it’s like to be disabled are disabled people themselves, not parents of children with disabilities, doctors, or therapists – no matter how well meaning they are.
Refer to the Disability Language Style Guide for further guidance.
Keep it simple.
When describing medical conditions, try to keep things simple. Words like pulmonary stenosis and trachea may roll off our tongues but your audience may not know what such terms mean. Whenever possible, describe things in a way everyone can understand – for example: “respiratory issues” or “a tube she needs to breathe.”
Simplify insurance and other terms as well. You don’t want your audience wondering what a Katie Beckett waiver is while you tell your story. Also avoid acronyms like“NICU” when you can say “neonatal intensive care unit” instead, so all can understand.
TIP! Ask a friend who doesn’t know the names of all of your child’s conditions, or how exactly insurance and hospitals work, to read over what you’ve written and help simplify anything they don’t understand. Of course, if the specific medical condition your child has or your child’s path to Medicaid is vital to what you are saying then include it – just be sure to give a (very brief) explanation.
If your child is able to share their thoughts, ask them how they feel about you talking about their disability and your family’s story. Ask what they are comfortable with you sharing publicly and respect anything they’d prefer you keep private. If your child is not able to give consent or feedback, use your best judgement by imagining how you’d feel in their place.
When telling your child’s story try to keep in mind how they might feel about hearing it one day. Though your child may be small now, one day they might find your speech, op-ed, or TV appearance and hear/read every word. Consider how your child will feel in the future when deciding what and how much to share.
It’s perfectly fine to keep parts of your story private. You do not need to share all of your story, just what you are comfortable with.