When a nondisabled parent discovers that their child has a disability, they are thrust into a uniquely difficult position. They must learn to support and accept an aspect of their child’s experience that is usually unfamiliar to them. Despite the fact that up to one in five people has a disability, most nondisabled parents have not gotten the kind of disability exposure needed to really understand and accept their child’s disability. As a result, many parents in this situation tell me they are overwhelmed, sad, devastated, terrified, or have other intense negative reactions to a disability diagnosis for their child.
An increasing number of parent support groups have emerged on social media for parents of disabled kids. This is, overall, a very positive thing that allows parents to share experiences and advice with other parents. Disabled adults frequently join these groups to share their own childhood experiences and advice with parents. This, too, is perceived as a helpful thing by many parents. Disabled adults can offer the kind of cultural awareness and knowledge based on lived experience which parents rarely get in the wider world before they have a disabled child.
However, as this week’s guest post points out, sometimes tensions can arise in online groups between nondisabled parents and disabled adults (with disabled parents often ignored altogether). As in any online environment, tactless and disrespectful comments on either side can destroy an otherwise supportive climate. But there are also intergroup dynamics that may arise in these groups which mirror the historical ableism patterns that disabled people have experienced for centuries. Parents new to the disability community may not recognize these patterns. The intent of this guest post is to help parent groups build policies that allow parents to fully benefit from the support of disabled adult members.
Four Tips for Crossing the Disabled Adult/Parent Divide
By Tasha Chemel
In the disability community, there tends to be an artificially imposed divide between parents of disabled children and disabled adults. This divide can become magnified in online support groups where miscommunications abound and the tone and intent of posts can easily be misinterpreted by both sides. The good news is that I strongly believe that this divide is far from inevitable. Based on my own experience as a blind adult member of two groups for parents of blind and visually impaired children, I offer four tips for how parents and disabled adults can work together to create parent groups that are conducive to dialog and collaboration.
1. Mixed messages.
As disabled adults, we sometimes receive confusing and mixed messages about the nature of our role in parent groups. It often seems that though we are permitted to give tangible and concrete advice about finding the best screenreader/laptop/¬cane/wheelchair, etc., our efforts to reframe parents’ questions are not always appreciated. For example, a parent might ask about the best way to get a road sign installed stating that a blind child lives in their neighborhood, whereas a blind adult might point out that this kind of sign might be stigmatizing for the blind child. Some parents get upset when such reframes occur, and this is partly because they were not asking for a reframe in the first place. I think the ground rules have to be clarified here: if the parent group as a whole doesn’t want to allow these reframes, then this has to be made explicit. Disabled people will have to decide whether they are all right with having a conditional role in the group.
2. Safe Spaces
When a child is newly diagnosed, fighting ableism on a systemic level is the last thing most parents are thinking about. Many parents are struggling to simply get through each day. For this reason, it’s not surprising that they need a place to grieve and vent. When disabled adults join parent support groups, it should be with the understanding that parents are at different places on their journeys, and that some interactions might be very helpful for parents but are not necessarily healthy for us to witness. Sometimes we might have to step back from the group as a result. At the same time, there is a difference between a parent who expresses grief and a parent who makes sweeping generalizations about all disabled people and acts defensively when a disabled adult attempts to educate them. Disabled adults should feel free to seek out admins in these types of situations, without being afraid that the admin will use parents’ need for a safe space to shut down any mention of ableism. In addition, the group should decide whether it will allow public call-outs.
3. You’re not a parent.
A common response I receive when posting to blind parent groups is that I am not a parent so my comment is not valid. This is true. I can’t speak to what it’s like to parent a blind child. I can, however, speak to the lived experience of being one. This is a valuable perspective for parents, since disabled children become disabled adults. As a disabled adult, I’m uniquely qualified to talk about how my parents’ decisions have affected me. When disabled adults post to parent groups, they do have to keep in mind that there are aspects of a situation they might not be thinking of. For example, if a disabled adult suggests that a parent take time to do something for his or her child that is very labor-intensive, they are not considering that the parent might have other demands on their time, such as additional siblings or work responsibilities. At the same time, parents shouldn’t dismiss comments made by childless disabled adult’s simply because they are not parents. They also shouldn’t automatically assume that a disabled group member is not a parent, or that a parent member is not disabled. Disabled people can and do parent disabled children, and the assumption that all disabled people are nonparents is rooted in unintentional ableism.
4. Silencing of Disabled Adults.
Finally, disabled adults have historically been silenced or spoken over by parents and professionals. When a post written by a disabled adult gets deleted, it sends a message that the adult’s perspective is not important or not welcome. If a post gets really out of hand, freezing it, rather than deleting it, will usually solve the problem. IF a parent group has collectively decided that it wants disabled adults to be valued members of the community, then the group must do its best to ensure that the deeply entrenched patterns of silencing of disabled people are not replicated.
Tasha Chemel is a blind writer, teacher and potter. She has master’s degrees in social work and education from Boston College and the Harvard Graduate School of Education. Currently, she is a writing tutor at two universities and is also completing an internship in academic advising. her essays and creative work has appeared in Wordgathering, Getting Along with Grief, Breath and Shadow, and the anthology Barriers and Belonging. Find her on LinkedIn at https://-www.linkedin.com/in/¬tasha-chemel-bab8556/