For many years, I’ve been involved in a fantastic local organization called Turnstone that serves the disabled community with a variety of services. I’ve been blessed to benefit from Turnstone’s services since I was 3, both as a client in therapy and in other programs. In recent years, I have transitioned into volunteer roles, including helping with fundraising preparations.
One of the most anticipated fundraisers of the year, Casino Night, is quickly approaching. Those of us who helped organize it are eager to see results. My main task was to contact businesses to verify that they’d received event information and to ask if they’d be interested in donating items to be auctioned, raffled, or given away.
As I reflect on the many interactions I’ve had with potential donors over the last couple of months, I wonder how knowledge of my disability, rather than anonymity, might have affected their responses.
This is the second year I’ve helped to prepare for Casino Night, and I’ve established a short introductory speech I use in every phone call and email to business owners and managers. The purpose is to explain who I am and why I’m reaching out. I usually do not mention my SMA.
I don’t deny that there may be a benefit to mentioning my disability. While most people I talk to are kind, helpful, and receptive, some have difficulty hearing me, while others may ask me to call them back later. They are unaware that much of my day is filled with breathing treatments and medicine administration, which could prevent me from making other calls.
As I consider whether to share about my disability, I can see several sides to the issue. Many would agree that being presented to people with visible disabilities tends to evoke a compassion-based response from strangers. But while compassion is appreciated, sometimes it turns into infantilizing, or speaking to those with disabilities as though they are children.
I also can see the other side of the argument, in which not sharing about my disability allows me to remain anonymous and possibly increase the likelihood of being spoken to as the adult and competent young woman that I am.
On a few occasions, I do bring up my disability. For example, sometimes I tell people I am disabled if they are having a difficult time understanding me.
Although I have been gifted with a strong, clear voice that most people with SMA type 1 don’t have, when I get tired, my speech becomes slightly muffled, and my words start to sound squished together. When this happens, I don’t want people to feel bad if they can’t hear what I’m saying. I also don’t want them to think they can’t hear me because of something they’re doing wrong.
The other time I might bring up my disability is when the person I’m speaking with shares their personal connection to Turnstone. I recently had an email exchange with a local business owner who is familiar with the organization because her daughter received services from Turnstone. At this point in the conversation, I decided to mention that I am a client as well.
Connections and compassion have helped many people with disabilities share their stories in a positive light. I’ve had a variety of experiences as a result of helping to make this weekend’s Casino Night a reality. I’m glad that most were positive, and I’ve enjoyed getting to foster new partnerships for Turnstone as well as building on existing ones.
Are you involved in something that requires frequent phone or email interactions? Do bring up your disability? Please share your thoughts in the comments below.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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