NEWS RELEASE | Scoliosis Research Society Responds to #NotDeformed
October 24, 2020
Contact: Ashtin Neuschaefer, CAE, Scoliosis Research Society
Scoliosis Research Society Responds to #NotDeformed
Milwaukee, WI (October 24, 2020) — In recent weeks the Scoliosis Research Society (SRS) has been contacted by Curvy Girls Scoliosis regarding the use of the word deformity, initially in regards to the name of the newly developed SRS podcast, and later in response to the use of the term throughout all SRS platforms.
SRS acknowledges the concerns raised regarding the use of the term deformity. Changes in the alignment of bones lead to what clinicians have called skeletal deformity. The bones are aligned in an altered shape or deformity which may or may not lead to a difference in the cosmetic appearance on a patient. Scoliosis is a condition, while the shape of the bone is a deformity. Scoliosis, kyphosis, spondylolisthesis, and other terms describe such differences in the shape of the spine. However, they have not described persons with these conditions as deformed.
The SRS membership is made up of orthopaedic surgeons, neurosurgeons, other medical specialists, researchers, nurses, orthotists, physiotherapists, and other experts from all around the world. As a Society, we not only fund research and provide education for scoliosis, but the full spectrum of care of differences in spinal alignment.
Steps that are being taken:
- Upon first mention of this issue, the SRS immediately removed its podcast and changed the title to Scoliosis Dialogues: An SRS Podcast. All mentions of the word deformity were removed from the recorded podcasts.
- SRS has tasked its Patient Education and Website Committee to review the materials in the Patient & Families section of our website so that the use of the word deformity can be removed. This effort is underway, but will take some time as there are hundreds of pages that require review. It will be completed as quickly as possible.
- Earlier this year, SRS formed a Patient Focus Task Force. Their charges include involving patients in the conversation around this area.
We will ensure immediate changes to those things we can, such as the SRS podcast and social media posts, and will continue to have discussion around our wording choices moving forward.
SRS appreciates the patients and their loved ones who have reached out on this subject, and looks forward to continuing our work with Curvy Girls, the National Scoliosis Foundation, and the StraightForward Foundation to diminish the stigma of scoliosis and advocate for better patient care.