Family vs Ableism: What I’ve Learned As a Mother of a Child with a Disability
Remember how your teacher used to ask you what you learned on your summer vacation? What I learned this year from May to September can be summed up in these two phrases: “Be gentle with yourself” and “Everyone is doing the best they can.”
These two short sentences are transforming me and I hope that after you hear about my summer they will also touch your life. Much of their impact didn’t happen immediately, meaning their true zen didn’t touch me right away but came after lots of reflection.
Let’s start with May. Did you see our family on the news???!!! We were on all the local Boston stations! It was fantastic!
We were thrust into the spotlight when a neighbor decided they were going to take us to court to stop the home modifications we needed to make so our house could be accessible for Shelby. We broke no laws, our permit was valid, we know their reason but have chosen not to share it publicly. It was scary and we kept the matter to ourselves until it was crystal clear that they were going to stop at nothing to get what they wanted. That was when I shared our problem on our Town’s Facebook page and the town came out to support us. It was amazing! And it brought news crews. Not so amazing. Check out the coverage by googling #imwithshelby
Now was our moment. Now was our time. What words would I use to make people know “disability isn’t bad?” What would I say that wouldn’t be ableist? This was the pressure I put upon myself each time a microphone was plopped in front of me. I don’t know if I found the right balance between “Shelby is perfect I don’t want her any other way, disability is ok.” and “Our life is tough, special needs land is hard and sad at times and now we have these neighbors who are making it worse.” I internalized this pressure from our special needs world. I kept imagining something I said being misconstrued, picked apart, or analyzed much like that mom who talked about her son with autism (or is it autistic son? Which one is less ableist? Autistic people say Autistic person not person with autism. What do I do? What do I write?! Rabbit hole ahhhh!!!) This mom was just sharing her life, her story, “living her truth”, just “doing her best.” It is ok for others to live and speak their truth, but for some reason we special needs parents have to represent a whole diverse body of disability in every thought, action, experience, and word AND then it either uplifts, tears down or sets the whole movement back pre-ADA. Many people jumped on this mother and were not “gentle with her.” In the days following her video and the responses to it I learned about myself and our community, I grew and I am grateful. “She is doing the best she can. Be gentle with her.”
Anyway back to me and my life.
I’m not worrying anymore about what I say or do for our community and the outcomes. I’m going to start being more concerned with “doing my best” for my family and know that when people see the love, care, and devotion I have for my all my children those actions will speak louder and make a bigger impact on my immediate community (that being family, friends, and Church) and then spill over into our larger community (that being Trader Joe’s shopper, homeschool co-ops, Special Needs land, etc).
When I drop my pebble in my pond the closest ripples impact the people closest to me. I need to be gentle with myself and stop trying to reach the outer limits of my pond. I need to stop thinking about how the ripples from my pebbles will reach the shore AND I need to stop looking for bigger pebbles to make more and stronger ripples to potentially reach further out into the pond. My pebbles impact the lily pads closest to me, I need to focus on doing my best for my lily pads who will feel my ripples most directly.
In July there was the loved one who got angry with my girls’ behavior and told me “Your girls are bossy!” I know my girls are strong-willed and bossy, I wasn’t surprised by their declaration and I was able to listen to this person and not bite back with comments about their kids’ behavior. I could step back and say, “Be gentle with yourself Nicole. Your girls are bossy. They are self-aware and self-confident, not shy, they are able to use words to express their wants and feelings. That’s not bossy. You correct them and discipline them when they are rude and demanding. You even made a song ‘It’s ok to be the boss but you have to be a kind boss.’ and you’ve been singing it to them since they were three! This other person must be dealing with some stuff, it is not your kids problem it is theirs. You don’t understand what they’ve been through and why they parent like they do. Nicole that other person is doing the best they can.” If this person had a Nicole-is-doing-the-best-she-can-be-gentle-with-her attitude they may have thought about how my girls may be bossy because so much of their lives are ruled by the stress of having a sister who is disabled with complex medical needs (wait is that ableist? A my-poor-kids-disability-has-made-their-life-worse worldview? AHHHH Rabbit hole!!!!) People feel the need to comment all the time and they have no idea where the person is coming from; much like this family in the news in July.
In August there was the bullying episode. How do I even write about this? We had an orientation of sorts where four other families with young children got together to discuss some procedural stuff (there were about five to six kids ranging in age from three to ten-ish), the moms were in one room and the kids played in another, an open door allowed us to pop in and out and check on the kids. At one point I saw Shelby climbing up on a couch to play with some kids sitting on a window sill. I went in to praise Shelby for climbing (a really big deal) and trying to play with other kids (an even bigger deal) and that’s when one of the kids told me “She’s creepy.” That was when I realized they were on the window sill trying to get away from her. I asked “Why do you think Shelby is creepy?” The response was “Her eye is creepy.” I gave the kids my usual response “God made her body and he made it perfectly, just how he wanted it. Did you know she is blind in that eye?” The response was “She is creepy.”
I was crushed and I later found out it went on for about an hour.
It gave our family an opportunity to talk about bullying and what to do. It gave me an opportunity to write a difficult email to the facilitator. It gave me a chance to reflect on those other families and acknowledge they are “doing the best they can” and that I don’t know why their kids were mean to Shelby, I don’t know if they were scared or if they have parents who haven’t taught them to be kind to all types of people. I had the mental space to be “gentle with them.” I also had the mental space to say to myself “those kids were mean so be gentle with them Nicole.” It gave me a chance to think about how I think about and see Shelby. I see Shelby first and other people who may not know her or another with a disability will usually see disability first not the person, the soul inside the body.
I have beat myself up a little bit about how I didn’t think to plan ahead and tell the group Shelby would be coming and describe her differences. I have beat myself up for the way I have personally internalized ableism; that my understanding of it and practice of anti-ableism (and not from a militant heart space) made me decide to not say anything because by explaining Shelby how she is, looks, and what she does or doesn’t do I am justifying her existence. We need to explain why it is ok for her to be who she is. Warning others of Shelby’s differences before they encounter her adds to their ignorance that Shelby’s defective, not like others, it puts all the attention on her differences and does not emphasize the countless similarities between her and her peers.
Then my thoughts about the August bullying swing the other way and I think, “Nicole be gentle with yourself. You did your best, you let Shelby be a kid, play with peers and enjoy some freedom.”
And finally there is Baby Number Four (BNF) whom we found out about in March and is arriving around December 24. This is the first time I am mentioning BNF on the internet or in public. There has been no cute announcement, no big hurrah. I think our extended family may know because our parents have shared, but I’m not sure. It has been a weird time. Initially, for like three days, I was enthusiastic, then shocked, then numb. People who know have asked “how are you going to do this?” Well meaning, but sometimes I feel like the subtext is “Shelby has so many needs (burdens) how will you manage?”
And I’ve wondered: How will I care for Shelby when I’m eight or nine months pregnant? I’m so tired now! What if this baby has a disability!? Why am I worried about disability? Disability is natural, well it’s also hard! Add to this the fact that I’ve told my doctors about my daughter’s genetic disorder and all it brings, and they still insist on talking about the chance something may be “wrong” with BNF. “If you push back your level two ultrasound you won’t be able to terminate the pregnancy if there is something wrong with the baby.” I keep telling them I already have a daughter who has something “wrong” with her and it is the best, most “right” thing that has happened in my life. Why aren’t I over the moon about BNF? I always wanted four! How does what I am feeling show how little I’ve grown? “Be gentle with yourself Nicole. You are doing your best.”
I’ve been too worried about the ripples my rock would make way out at the edge of the pond, way out in obscure special needs land. I was too concerned about how my actions would impact the cause, that they be ableist. I was not concerned for the lily pads near the splashing rock that would receive the largest ripples and have the biggest impact. I did not put the focus on what is really important, me “doing the best that I can” for my family and being “gentle with myself” … and we have another lily pad coming.
Nicole Feeney writes about how God grew the Feeney family from two to four to five in two quick years… and the subsequent adventures on her blog, Fab Feeney Five.
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