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How To Become Involved In Advocacy

When we are living in crisis, chaos, or even just trying to grapple with a new diagnosis, we are usually in a place where we can’t or are even willing, to pull back, look at the bigger picture and decide if we have it within ourselves to become an advocate for others as well as for our loved ones.  Here are some ways that you can become more involved in advocacy.

If you would like to become more involved in the disability world, but don’t know where to start, here are some things you can try.

girl in black and white long sleeve shirt sitting on black wheelchair

Start with your loved one’s main diagnosis

It could be Autism, Cerebral Palsy, Down Syndrome, or a rare genetic disorder.  Most of these will have state, national and international groups that you can reach out to.  Not only for support but also to volunteer to help other families who are on a similar journey to yours.

For example:
National Autism Association
Autism Society
Global Down Syndrome Association
National Down Syndrome Society

Rare genetic disorders

If your child who experiences disabilities is an ‘orphan’ (meaning has a genetic disorder that hasn’t been discovered yet) or has a rare genetic syndrome, check to see if your state has a Rare Disease Advisory Council and follow them for ways you can be involved in advocacy.  

If your state doesn’t have an RDAC, reach out to the Nation Organization of Rare Disease (NORD) and see if you can volunteer to help them establish an RDAC in your state.

Advisory Councils

If you want something more local, reach out to your local Developmental Disabilities office and see if you can join the Advisory Board (or Council).  The councils (in Oregon) will discuss policy changes, and incident reports, and share information and resources.  Most are usually looking for families to join them.  Some you can just join and some you have to submit an application and/or resume and be approved by the current council before you can join.

two person standing on gray tile paving that says 'passion led us here'


Some organizations do a lot of advocating at the state level and will even train parents on how to share their stories and advocate for policy changes that affect people with disabilities with their state government representatives.  Here in Oregon, one organization is called the GO (Grassroots Organization)! Project.  They act in conjunction with regional advocates, several state agencies, and families to identify barriers in the disability community, promote legislation, and provide individuals and families the opportunities to educate other families, the general public, and policymakers at all levels.

Volunteer and fundraising

If you are looking for something with less of a time commitment, look for local disability organizations that are looking for volunteers or are doing fundraisers.  Maybe you can volunteer at their location, donate items to their auction fundraiser or participate in other fundraiser events like walks/rides/runs.

If you want to get involved in some way, there is always a way.  If you don’t know where to start, talk to some of the local families you know and maybe they can point you in the direction of a local non-profit that may be able to connect you with other community partners.

My journey in advocacy

I started small by becoming a regional ambassador for my son’s genetic diagnosis international organization so I get to connect to families in my state that have my son’s diagnosis and help them through their journey.

I then took a job at a non-profit that has allowed me the opportunity to connect with other organizations at the local, county, and state levels that are involved in various ways of trying to make lasting change and promoting policies that better the lives of all, but especially those that experience disabilities in its many forms.

Now I am writing a blog, which I hope, will be a resource for individuals and families that experience disabilities.  At least it can be a way for all of us that have disabilities in our life to connect with one another and share advice, tips, and resources.

man in white shirt carrying boy on his shoulders

Parent leadership

For something different, look into leadership classes.  These could be in the form of your local Parent Training and Information Center.  They will usually have a variety of training that parents and people with disabilities can take on many topics.

Check out the National Family Support Network for different events. Plus you can find your state’s Family Support Network to see what they have to offer.  

One thing that I have really enjoyed about the pandemic was that so many organizations went virtual.  All those trainings I had wanted to attend for years, I now could because they were virtual.  And that has been amazing!

I took self-care courses, participated in rare disease studies, learned about alternatives to guardianship, supported decision-making, and many more.  I hope that is an option that stays around after the pandemic.

Take to the internet

These are just a few of the many ways you can get involved in advocacy.  For more ideas, open up a browser and type in ‘how to become involved in the disability community”.  There are all kinds of ways that you can become involved.

What are your favorite ways of giving to your community, whether it is disability-related or not?  Drop some comments in the chat below.

~ Zilla Q

Other Momma Bear Bytes posts:
Organization is key
Preparing for a public emergency

Other advocacy information
Medical Home Portal

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