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Image descriptions:
Dance: An image from DX ME FIX ME. On a dark stage, Audre is bathed in hot pink light while resting on her back, her body supported from underneath by two different chairs. Under her head and upper back is a rolling stool, under her pelvis and feet is a black folding chair. Audre’s shins press up against the back of the folding chair, her hands rest on her ribs. Her elbows hand toward the floor. She is wearing black underwear and EKG electrodes on her breasts. Her blonde hair is partially pinned, the rest hanging toward the floor. Just below Audre’s body is a pool of light reflecting from a spotlit easel with a giant lined notepad. On the notepad are some large words partially covered by headshots of two doctors. A drawn head with glasses and curly hair is below the headshots. Audre is downstage from the easel, very still, staring at the ceiling, processing a difficult experience. Photo by Scott Shaw.
Science: A flow chart of HAPT’s proposed mechanism. On top of a blue background are 6 ovals, 3 on top and 3 on bottom - perfectly aligned. Each oval has a different color background and different text. There are arrows pointing from one oval to the next. The first oval is yellow with text: hEDS & HSD. A white arrow points toward an orange oval with text: connective tissue laxity, joint instability. A white arrow points from the orange oval to a green oval with text: proprioception, muscle-tendon dysfunction improves. This oval is lined in hot pink. From the top right corner there is a 10 pointed star with a light pink background and hot pink lining with text HAPT, which is the name of the intervention whose mechanism the chart is describing. From this HAPT star points a thick hot pink arrow toward the green oval as well, looking as though it injects hot pink to the green oval and the following ovals in the mechanism. From the green oval points a hot pink star toward a purple oval with text: better balance, gait, increased strength. A hot pink arrow from this purple oval points to a light red-pink oval with text: less pain and fatigue; improves anxiety and depression. An arrow then points to a blue oval with text: quality of life improves, disability decreases. The chart is explaining that the intervention HAPT impacts proprioception, improving muscle tendon dysfunction and all other compounded manifestations of widespread hypermobility following. Below the HAPT star, at a diagonal, is text: re-weight afference. This is the descriptor of how HAPT impacts proprioception, by shifting the sensory information that the nervous system receives. It is important to note that “decreasing disability” is used to describe lower scores on medicalized measurements of disability that impact quality of life. This is not a goal of HAPT. This is used to explain to researchers who medicalize disability that a person’s function improves significantly when people make choices that support their access needs and reduce the risk of chronic soft tissue injury. It is an attempt to use their own words to describe improvements in life experience by accepting and supporting your disabilities, not from eliminating them.
HAPT: A close up image from one side of someone laying down receiving HAPT. A person is relaxed on their back with their knees bent. Their hands rest at the base of their ribs, one atop the other. Only their denim clad thighs and beige torso is in the frame. The hands of the HAPT instructor are lightly placed on the front and back of this person’s rib cage. Wearable heart watch monitors, jewelry, and nail polish are worn by both people. They are in beige and pink lighting. Photo by Mae Eskenazi.