When I introduced Celiac Awareness this Month this year, a big piece of my suggests on how to raise awareness revolved around the aspect of advocating for yourself. In a three piece series I am going to discuss tools that can help you self advocate, but first let’s talk advocacy.
As a social worker, advocacy and self-advocacy were terms that were drilled into my head during school, and which I fully back. What do they really mean though?
According to the Free Dictionary:
ad·vo·ca·cy n.The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.
Self advocacy is a bit tricker to define, as it can mean several things, but in general self-advocacy is the simply application of advocacy towards ones own life. So, self advocacy would be representing ones self in an effort to get needs or wants met. The reason this is a tool for spreading awareness? It often makes other people aware of the situation in which you exist and can create not only awareness but change.
For many on a gluten free diet, and with Celiac Disease, self-advocacy can become second nature once you get the hang of it. Many people think of advocacy at a macro policy level, such as advocating for change in laws but it is so much more than that. It can be as major as advocating for labeling laws to simply requesting a new product be supplied in your grocery store.
In a three piece series I’ve outlined some of what I feel are the most helpful Self Advocacy Tools for those with Celiac Disease, or those following gluten free diets. I’ve broken it down into three areas: Personal Life, Shopping and Dining Tools, and Legislative and Political Advocacy. In each of these are a few categories with specific tools. Please note these are just tools that I’ve come across, and of course the list of tools and self advocacy tips doesn’t end there!
Self Advocacy with Friends and Family
With an emphasis on food and eating during social situations, having a unique diet need can often throw friends and family off. It is important that you advocate for your needs in these situations, and being blunt about them in a kind manner can often ease a lot of tension and make for a great experience for all. Here are a few tools that can help you advocate and improve awareness.
- NFCA’s “What is Celiac Disease?” Factsheet
- NFCA’s “Entertaining Gluten Free Guests” Factsheet
- Remember that Celiac Disease is genetic, so advocate for the health of your family by talking to them about getting diagnostic testing. And check out NFCA’s “Seriously, Celiac Disease” factsheet on talking to family about them getting tested.
School Advocacy
In the school setting a major way to advocate for a student’s needs is through the development of a 504 plan., which outlines the student’s needs and the accommodations to be established. Simply advocating for your child’s needs for snacks or products is also a form of school setting advocacy.
- NFCA’s 504 Plan Roadmap for the Accommodation of a Student with Celiac Disease
- Educator Letter from the NFCA
- The American’s with Disability’s act can come in handy at the College level for advocacy needs, especially if mandatory meal plans don’t include gluten free options (more on that in a later post).
- Consider providing your child’s teacher(s) with a list of safe snacks, so that your child can feel included during snack time if snacks are provided.
- Suggest that your school or college seek out Gluten-free Resource Education & Awareness Training from the NFCA in order to boost their knowledge about, and ability to serve, those with Celiac Disease.
Medial Field Self Advocacy
Because Celiac Disease is associated with so many other conditions, medical advocacy is an important area. The advocacy here is two fold here: advocating for a physician who understands the condition or advocating for the testing or treatment you might need. Unfortunately, advocacy tools in this area are a bit sparse, but here are a few ideas.
- Educate your physician by providing them with a link to the University of Chicago’s Celiac Disease Center’s “Medical Professionals Guide to Celiac Disease“
- Share the National Digestive Diseases Information Clearinghouse’s Celiac Disease document with your physician.
- If you work with a nutritionist, suggest that they use the ADA’s “Celiac Disease Toolkit” to better treat their gluten free clients.
- Find a hospital which has a Celiac Disease Clinic.
- Educate medical professionals about disease that can resemble, or are associated with Celiac Disease.
In the next Gluten Free Self Advocacy Tools post I’ll talk about Shopping and Dining Tools available to help you better advocate for your gluten free needs. Stay tuned, and feel free to share any advocacy tools you might be aware of.