Advocacy…Are You Doing it Effectively?

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I’ve been thinking a lot recently about what it means to be an effective advocate. In addition to being active in the Marfan community, I’ve also been involved (to a lesser extent) in autism communities. (I say communities because the organizations and their missions vary widely and I have yet to find an organization whose mission and activities I can fully support.) I’ve seen advocacy approached in a variety of ways among both diagnoses’ communities – some of which I think are more effective than others – and from that I’ve created some rules of advocacy.

The first rule is a long-standing philosophy, and that’s “nothing about us without us.” No decisions affecting whomever you’re advocating for should be made without the input of that community (typically referred to as self-advocates), inasmuch as that is possible (meaning people of that community exist to consult…some diseases may have a very short life expectancy). I hope I don’t have to explain all the reasons it’s important for self-advocates to have a say in how they’re talked about and what programs are developed for them!

The second rule of advocacy is to assume love. Start with the assumption that most people really do want to do the right thing, even if you don’t agree on what the right thing is. In a perfect world, what self advocates want and what parent advocates want would always line up exactly. But, parent advocates are often not affected with the condition themselves (i.e. – many autism parent advocates I know are not also autistic), and even if they are, their opinion may be different from their child’s. (I know what it’s like to have Marfan syndrome, but how J ultimately feels about having Marfan may completely differ from me.) Still, even with these differences, we can assume that most parents love and want what’s best for their children. That assumption makes…

Responding with patience easier. When you’re doing advocacy work of any kind, people are going to offend you. People are going to advocate for, do, or say things that you believe are wrong. You should absolutely speak up! The way in which you respond though will have an impact on how your message is received. For example, I may disagree with parents who refuse to allow their child the option to participate in the Marfan and related disorders community. But, I can understand that there are probably many reasons for their decision, including fear of the present or future, lack of understanding about how the Marfamily functions, lack of knowledge about potential benefits, or past bad experiences (either related to Marfan or not). I will have better luck at perhaps changing their minds if I take the time to get to know them and try to see where they’re coming from first. If I jump to a conclusion/assume my story is their story, or assert my position as the only possibility immediately, I’m liable to close doors.

I would also say it’s more effective to argue an idea rather than an individual. Public shaming usually puts people on the defensive, and that closes doors. Taking someone aside, meeting them where they’re at in their beliefs, and then bringing forward your argument has a greater chance of working. That doesn’t mean you agree with their beliefs, or ignore what it’s important to you, it just allows the other person to feel heard. And while you may not agree on one issue (such as the importance of a cure), you may see that you can move forward together to work on something else (like expanding acceptance in schools). That is still an advocacy win!

Lastly, know when to walk away. Changing people’s minds takes time. They may not be ready to hear what you have to say, or they may fundamentally disagree with you and that will never change. You can’t win over everyone.

Are there any rules you’d add to this list?

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29 Comments

  1. “No decisions affecting whomever you’re advocating for should be made without the input of that community ” This confuses me. Are you suggesting that as a parent advocate I should not make decisions for Logan without first consulting the marfan community?

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    marfmom Reply:

    Great question! The answer is no. What I meant here is on a larger level. For example, The Marfan Foundation should not be making decisions about the Marfan community without consulting people who have Marfan syndrome. So, if their board of directors were comprised entirely of parents, doctors, and businessmen, that would be a problem. (Luckily it’s not: their policy is to always have patient representation on the board.) On an individual level, “not about us without us” would look like you allowing Logan a say in decisions that affect him, at a developmentally appropriate level. Does that make more sense?

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    Meghan Riley Reply:

    I agree. Autism Speaks is a big organization that advocates in the Autism community and for a long time, they didn’t consult people with Autism. I, as someone with Autism, still do not fully agree with everything they do as they often treat people with Autism as victims rather than encouraging them to accept who they are and grow. I for one don’t want to be a victim. It’s best to ask, whoever you’re advocating for, what they need.

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    marfmom Reply:

    Yes! That is why we don’t support Autism Speaks in this house. When my son was first diagnosed I had only heard of them but as I learned more about the organization we cut any ties to them. I don’t think it’s right for an organization to claim to speak for a group of people who they won’t even allow to be a part of their board of directors.

  2. Stopping by from the SITS Girls to say hi! While I can’t relate on the same level as a Marfan advocate I found so much of what you had to say relevant to being a good mom and advocate for my own kids, you’ve given me several things to reflect on. Thanks for sharing!

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  3. Stopping by from SITS… I just wanted to say I’d never heard of Marfan before reading this post. I think that just by having this blog and increasing awareness you’re performing some wonderful advocacy.

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  4. Great advice..not just from an advocacy stand point but in life as well!
    Ashley

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  5. I like how your blog is dedicated to a cause close to your heart. I’m sure you’re a great resource for many women!

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  6. I tend to be more effective at advocating for others than for myself. Stopping by from SITS comment love.

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  7. I wish more people would be patient and kind in their advocacy–for ANY cause–rather that harsh and bitter in their words. It makes it hard to learn and understand when people approach you with anger! Stopping by from the SITS comment challenge :)

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  8. I think these are great tips for advocating in any area. Thanks so much for sharing them.

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  9. It’s always great to find other special needs bloggers! I added you to Feedly to I can follow. I spend so much time reading up on things that I knew what Marfan was. Visiting from SITS.

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    marfmom Reply:

    Oh great! I’ll head over to your blog. Love SN bloggers! :)

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  10. You certainly have a lot of wisdom about this. Everything sounds really logical and sensible. I think you’re right about people taking the time to change their minds too. Planting seeds is all we can do sometimes.

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  11. Helpful tips on being an advocate. You are definitely right that you can’t win everyone over, sometimes you just have to agree to disagree.

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  12. This is great advice and would also carry over to other aspects of life as well. Thanks for sharing. Visiting from SITS.

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  13. Great advice and rules thanks for sharing!

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  14. I agree with the other comments that much of this advice could be (and should be) expanded to the way we interact with other people in general. Great post!

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  15. I’ve never heard of Marfan before reading this blog. I read the guest post below this post. While, I obviously don’t know anything about Marfan, I do know how it feels to have a child with a disease. My son has Juvenile rheumatoid arthritis. A lot of the same rules in this post definitely apply to his disease.

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  16. Some great advice and so important in all areas of life as well!

    #SITSBlogging

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  17. Great insight and advice on advocacy! I also agree that whomever we are advocating for be allowed input in any decisions. Also, just remembering to respect others opinions whether you agree with them or not and to treat everyone with respect and compassion. So many times people will discount views that disagree with their own and attack those people instead of respectfully agreeing to disagree.

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  18. Such a great post! Your blog is really interesting and inspiring. Mez xx SITS

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  19. Great post, these tips are helpful for a range of situations.

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  20. I agree that this advice can be applied in life in general. I also definitely agree that the input of those being advocated for should be of high priority and public shaming should never be okay!!

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  21. This is a fantastic post! I’m a passionate self-advocate as well and I’m so glad to have discovered you blog! Blogs written by self-advocates are a rare niche!

    I just wrote a post for a blog called Think Inclusive which echoes what you say about parent advocates and self-advocates, and I write quite often about the idea of “nothing about us, without us” on my own blog. I’d love to share that post with you: http://www.thinkinclusive.us/who-should-speak-for-the-disability-community/

    I really love your points about assuming love and responding with patience. Those are so often forgotten. Advocacy is most well received when done firmly, but with kindness.

    I’ve explored your blog a bit and followed you on all your social media outlets. I love what you have to say and I would love to connect!

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    marfmom Reply:

    Oh yay for meeting another self-advocate! Can’t wait to go check out your blog! Thanks for sharing your post with me!

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  22. “Assume love”-that is an amazing approach that I think gets lost in the shuffle of taking action. I’ve worked in nonprofits for the entirety of my (short) career and by proxy am an advocate for my organization and the individuals it serves. It’s so important to put it in perspective daily and remember the human face behind what we’re doing. It adds meaning and can really help reshape a bad day.

    Thanks so much for sharing-I’m going to share with my team next week when I’m back in the office!

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    marfmom Reply:

    Thank you for sharing it! :-)

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  23. Thank you for the advice and for sharing. I enjoy looking at your website- I am learning a lot. Thanks!

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