The NaPaul Photographics Web site shows two talented young people skilled at capturing special moments and special places, even if what is before the camera’s eye would look ordinary without their powers of observation. The Adelaide, South Australia couple recently expanded beyond photography to offer social media marketing and Web hosting.
Aside from talent, the couple has something else that sets them apart. The 44-year-old Naomi has kyphoscoliosis and spinal cord injury. That never kept her from a normal life of falling in love and establishing a career, at least not until 2010. That was when she was diagnosed with COPD (chronic obstructive pulmonary disease), and the young couple’s world caved in.
Naomi’s breathing problems became severe enough to require 24-hour monitoring. She was already receiving 60 hours per week of assistance from a care aid. The South Australian Government decided if she needed monitoring beyond that and what her husband could provide, she should be institutionalized. The prospect of leaving her husband and home was shattering. It was also ironic on two levels. As Paul wrote in the petition he started on Change.org:
DisabilitySA are now saying the only option for Naomi is to go into a nursing home full time and/or supported accommodation or stay at home with NO support as this would become her choice….(what sort of choice is that?). She is married and young. But above all else the nursing home costs far more per day and DisabiltySA themselves have admitted that no nursing home or group accommodation is equipped to deal with her level of support!!
If nothing else, and human compassion cannot prevail, then surely money speaks louder. A nursing home is far more costly per day compared to a support worker at $234 per day makes more economic sense. If you can not agree with the inhumanity of splitting up a family, think where you would like your tax dollars spent.
Nearly 63,000 people signed the petition asking Premier Jay Weatherhill to rescind the government’s decision and agree to support Naomi Clarke’s request for 24/7 home care. The Premier agreed to meet with the couple and promised the needed support.
It is a huge victory for the Clarkes, who can stay together. Paul, who had to stop working in order to provide constant support for Naomi, can resume his work. Naomi, who would have been unable to pursue her career if institutionalized, can look forward to more successes. The decision also means a larger conversation will be taking place that will affect other South Australians facing physical and health challenges.
Naomi Clarke did not choose to be wheelchair bound because of kyphoscoliosis and spinal cord injury. She did not choose COPD. The Clarkes’ fight to be allowed the support they need to live full and productive lives within the parameters they have been given no doubt took an emotional and even physical toll on the couple. Fortunately, they were successful, thanks to the power of social media, and their success means important questions will be addressed for a lot more people. They give me hope.
Thanks to Jenni Woodroffe for letting me know about this couple.