I had an experience a while back that rattled me not only as a person, but especially as a mother dealing with physical disability. I’m hoping by stating my thoughts, opinions and feelings about the situation that I can bring awareness to the very population who I’d assumed understood compassion and inclusiveness in the first place. Perhaps this response will get them thinking and, better yet, bring an outpouring of understanding to everyone, even those without a disability.
I don’t have personal contact with other mothers or parents with disabilities or chronic illnesses. Months ago, I decided to reach out via the internet. I found a group (whose name I will not mention) that advertised as a place for mothers and mothers-to-be who’re in wheelchairs to band together, sharing ideas, tips, experiences and the like. I submitted a request to join and to my dismay an administrator contacted me, explaining that the group was for women with spinal cord injuries (SCIs) only. I told her okay and went about trying to find another place where I’d be welcomed. I finally found a group for mothers who use wheelchairs that welcomed me and have embraced me. The women in the group have a wide array of limitations as well as causes for why they’re in wheelchairs. I’m happy to be a part of their group and find it extremely helpful and supportive, even when advice, questions and experiences don’t apply to my situation or I don’t understand the other women’s needs very well due to the contrasting nature of our disabilities.
When I was told I couldn’t be in the group for mothers with SCIs, it made me feel rejected; I didn’t have the ‘right kind of disability;’ I was excluded when what I needed and longed for was to be included, to share in similarities rather than focus on the differences. At the time, my mobility was worsening and I was desperately needing to find support, encouragement and hope among other moms who’d understand how what was happening to my physical body was effecting my insides, my feelings, my thoughts, my fears.
So, why would it matter how I landed in a power chair? Maybe the women with SCIs had experienced an immediate and sudden life-altering change to their bodies and capabilities whereas my changes consist of a slow regression and breakdown in abilities in which I’m constantly having to adjust to. But haven’t we all had to grieve the loss of our old selves? Our old bodies? Past abilities? Haven’t we all had to work hard to overcome the challenges, both physical and mental, that have been placed before us? Don’t we all have the same initial worries about caring for our children; caring for ourselves long-term? Aren’t we all more alike in the places of ourselves that can’t be seen through the eyes? Maybe our bodies, our limitations, our disabilities are different, but can’t we find our emotions reflected in each others’ eyes?
To be honest, I was stunned and hurt when told I could not join the group. The very people that I was reaching out to so I could find a place to belong, to seek comfort, to be given support were telling me I wasn’t going to get all that from them because I wasn’t like them; couldn’t understand, relate. The population of women who I would’ve assumed believe in inclusiveness were turning me away. Wow. I hope one of them will read this. I hope they’ll stop and consider the bond we could have shared had they not been prejudiced in believing I wasn’t one of them. I hope they’ll be able to identify the discriminatory behavior that was displayed towards me (and likely other moms as well). Even if none of the members of the group read this, I hope you’ve gotten something out of it. I hope you’ll speak out against exclusivity even if you’re not part of the disabled community. Bring one another close; embrace everyone even if the only things you see are the differences; be supportive of the person who reaches out a hand to you, asking for help or guidance. It is our responsibility to allow people in, especially during their time of need – so that when we need someone, there’s a hand available to grab onto us.