The Self-Advocate/Parent Dialogues, Day Four: Zoe

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability.

Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over.

Zoe has the floor again today.

-The Editors


Dear Robert,

In your letter on Tuesday, you were adamant that parents have a place in the disability rights movement. I want to begin by letting you know that we are in vehement agreement on this point: in terms of advocating for the rights of disabled people, I absolutely think that non-disabled parents and relatives have an important role to play.

As commenters this week have been pointing out, this role is a complicated one. Among parents, advocacy is occurring on two levels: parents advocating for their children individually, and parents becoming involved in disability rights generally. Because you refer to yourself as a disability advocate as well as an advocate for Schuyler, I can see that you consider both types of advocacy to be central to your work.

As a parent, you are familiar with your child’s needs. Your description of the role of a shepherd as a guide and protector is a moving depiction of the way you relate to Schuyler as a parent — and, I think, the way parents relate to their children generally. I admire your efforts to guide and protect Schuyler, and I have no wish to tell you what to do on that front.

When it comes to broader disability rights advocacy, however, working cooperatively with disabled people becomes part of your role. The shepherd analogy is touching when describing parental care, but it is less appropriate as a model for a relationship between political allies. The problem is not only with this imperfect metaphor, but with the attitude towards disabled activists that the metaphor reveals: clearly, you cannot approach disabled adults as you would approach your child. This means not assuming that you know our needs as well as you know hers, not claiming to represent us in the same way that you represent her. This means seeking to work together with us, instead of working “on our behalf” without our input.

I have some concerns from you letter that I’d like to address. You say that you are committed to listening to self-advocates. When I said that some parents are hostile towards the political participation of disabled adults, you told me I was wrong. Yet certain parts of your letter on Tuesday read like a list of reasons why what I think doesn’t count. That feels hostile to me.

You say that I don’t understand the scope of the disability community because I live independently, which you seem to have extrapolated — incorrectly — from the fact that I write a blog. It’s true that I have gotten pretty good at blogging; I consider it an accomplishment to be proud of. However, you won’t find “posting writing on the internet” on any list of vital Activities of Daily Living. For the record, many of the tasks you will find on such a list give me a lot more trouble than writing a blog does.

You say that my ability “to even have this conversation” means that I am too “high-functioning” to advocate for disabled people as a group. I would like to point out that you have essentially created an impossible standard: anyone who can express disagreement with what you say isn’t disabled enough to have an opinion on the subject in the first place. I think you’ll understand when I say that this isn’t the way I expect a committed listener-to-self-advocates to respond when I express my ideas.

You also seem to want disabled self-advocates to be incredibly circumspect when we have disagreements with you. You express hurt and anger when we state our opinions in plain language. You ask us to “delay judgment” when we read an offensive remark from a parent, to “look past our emotions and our offense to find commonalities” — in other words, you ask us not to get angry, but to be polite. You’ve written that parents need to be “strong, entitled, and impolite” when they advocate for their children, but you seem to think that disabled people should be docile and deferential when we advocate for ourselves. Why shouldn’t we approach advocacy with the same empowered attitude that you encourage parents to take? If you want disabled people to ask nicely before you are willing to engage with us as allies, are you sure you’re thinking of us as your equals?

Now let’s talk about parents in the disability rights movement. As I said at the beginning of this letter, I am not at all interested in excluding non-disabled people from this struggle. I believe that parents and non-disabled relatives have an important role to play here. But it is not the only role. As Ari wrote yesterday, many people view issues pertaining to intellectual and developmental disability as parents’ issues, not the issues of the disabled people in question. In the public eye, you take up the whole picture. I’m not saying you should get out of the picture, but I am asking you to move over a bit and let us in.

In response to the first letter I wrote, some parents asked me what I think respectful parent advocacy looks like. I think that it might look something like PFLAG.

PFLAG (Parents and Friends of Lesbians and Gays) is an organization made up of straight, cisgender (non-trans) folks who are working to be allies to the LGBT community. As the name indicates, many of them are parents or relatives of queer or transgender people. PFLAG serves two purposes — it is a place for parents to go for education and support after their children come out, and it is a place for parents to organize themselves as allies to the queer and trans community. I think both of these purposes have applications relating to disability.

Many PFLAG parents have younger children, perhaps 12 or 13, who have just come out of the closet and are too young to get married or hold a full-time job. This doesn’t stop PFLAG from listing equal employment and marriage equality among its goals — just as adult queer and trans activists work to stop bullying in schools, although they themselves are no longer students. PFLAG plays a crucial role in the LGBT movement – but it is not the entire movement, nor does it set the movement’s agenda. To me, this is a good model of parent allies working together with people from a minority group to address the issues that this group faces. I would love to see a similar collaboration within our community.

What I like so much about the PFLAG model is that it acknowledges that the LGBT rights movement is about queer and trans people. What we need right now is a disability rights movement that truly acknowledges disabled people as the central stakeholders. We could really use your help to achieve this. You can acknowledge your privilege and make some room for us in conversations about disability. You can use the platform you have been given to help us get our voices heard.

We are all working towards creating a better world for disabled people of all ages. Robert, and other parents reading this, believe me when I say that self-advocates desperately want your children to get the services they need and to be included and safe in school. We are working towards those ends. We also want to tackle the issues that we face now as adults — not only so that we can benefit, but so that your children’s transitions to adulthood will be easier than ours. You know what your children need; we know what we need, and what they might need in the future. I truly believe that our movement will be most effective if we work together.

This means that we will have to do the opposite of retreating into our respective “tribes”: we will have to make a conscious effort to continue engaging with each other. If we do this, there will probably be a lot of conversations like these, which make many of us frustrated and uncomfortable. But I think there will also be progress. I think we will get to that better world faster.

I think it’s worth it.

What do you think?