Recently a parents group on Facebook has started a campaign using the hashtags #FUOI and #ihateOI – OI stands for Osteogenesis Imperfecta, a disability resulting in brittle bones prone to fracture. OI is the disability of the children of these parents who belong to the group. These parents have not only begun using these hashtags across their social media platforms, but have created a T-shirt campaign encouraging others to buy into the notion that OI is something to be viewed negatively. As someone who has lived with OI for nearly 30 years I wanted to share a few insights about using negative hashtags across social media and the potential implications they result in not only for children of the parents who use them but also for the negative views of disability that they create in our communities.
Though I do not have the experience of parenting a child living with OI, I do have the experience of living with the disability first hand. While I have experienced many traumatic fractures, pain and injuries during my childhood, I never had the sense from my parents or other adults around me that they “hated” my disability. Using hashtags like #FUOI implies that the disability is something negative and something to be hated. No child wants to feel that their parent hates a part of what makes them who they are. Spreading these negative messages only perpetuates the idea that children should hate their disability or look at it as something negative “affecting” them. It can be very damaging to teach children that a disability is something that “affects” them – we should rather celebrate everything that our children are and their disability is a part of what makes them who they are.
This is not to say that living with OI is a piece of cake or that a parent enjoys watching their child experience pain. There are days that are harder than others. Fractures happen that ruin your plans, cause a lot of pain, and can require a lot of time to heal. But there are also tremendous opportunity and positivity that I have been blessed to experience because of my OI. Without my disability I know that there are people I would never have met, experiences I would have never had, and doors that would have never been opened. Sure, there are things I wish were different about myself or that sometimes day to day life could be easier, but I wouldn’t trade my disability. Using hashtags that spread negativity about a disability are sending the message that people with disabilities should want to be like the able-bodied world, rather than celebrating the unique perspective and experiences that people with disabilities can provide.
What are your thoughts on messages about disability that you have experienced on social media? Share in the comments!