We hope you’ve enjoyed our series on employment for people who have Down syndrome! For our final post, we bring you some encouraging stories and zestful employment data that we hope will encourage those looking to support a loved one who’s looking for a job.
Today’s film is a difficult watch. It touches on an aspect of our past and present that we don’t talk about much – what happens when elderly parent caregivers get sick and there is no plan in place for their adult children.
There is no shortage of opportunities for us to help create change in our world today. We all have our reasons for why we choose to support (or not) a particular issue. When it comes to advocacy, we are usually motivated by causes we identify with. If we can picture ourselves or our loved ones being affected by a certain problem, we’re more likely to invest our own time and energy to fix it. What about the issues that we don’t allow ourselves to connect with? Who fights to fix the problems most of us just don’t want to acknowledge?
In our capitalist economy, our children with Down syndrome are seen by some as less than – not able to be “contributing” members of society.
So we fight.
We fight language in an effort to change perceptions. We fight against the “R” word because it demeans our loved one. We fight for person-first language in hopes that it will somehow convince people to care. We hope with all our being that saying our child is “a person who has Down syndrome” instead of “Down’s Syndrome child” will help society see the person before the label. Lately, we’ve even started using the phrase “happens to have Down syndrome,” perhaps hoping that people will see this person we love with all our hearts as we do – a human being – and not a drain on society at best, someone who should not have been born at worst. We cling to phrases like “More alike than different,” because we feel the only way to create change is to convince society that people with Down syndrome aren’t so odd that they should be made fun of, or worse yet, ignored.
“While disability affects people of all races, ethnicities, genders, languages, sexual orientations, and gender identities, this does not mean that impairment occurs uniformly among racial and ethnic groups.”
“It is vitally important to distinguish between disability as a natural part of the human condition, and disability-related health disparities that can lead to compromised care, ill health, institutionalization, and premature death. These are not consequences that inevitably follow the simple fact of impairment.”
“In short, the relationship between race and disability is a complex one that needs to be freshly viewed as race and disability together may have a previously unaccounted cumulative impact on creating health disparities.”
“PWD and members of racial minorities often share socio-economic characteristics and related health access barriers due to the expense of maintaining health with a disability. PWD are much more likely to experience various forms of material hardship— including food insecurity, not getting needed medical or dental care, and not being able to pay rent, mortgage, and utility bills—than people without disabilities, even after controlling for income and other characteristics.”
“The importance of appropriately disaggregated data is also raised because the nonhomogenous categories “people with disabilities” and “racial and ethnic minorities” experience different, and often surprising, specific health disparities.”
“People with developmental disabilities are often assumed to have greater access to care as a population that presumably visits care providers all the time, and yet this population experiences high rates of preventable health conditions such as fractures, skin conditions, obesity, poor oral health, and vision, hearing, and mental health problems. A multinational study of 16,000 adults in 12 countries, found that 68 percent falsely believe that people with intellectual disabilities had the same or better health care as the general population.”
“It cannot be assumed that because PWD of color may need more health care services, they actually get that health care easily, or that they receive appropriate health care, especially when additional factors such as coverage limitations, physical inaccessibility and lack of policy modification, and stereotypes are at play. PWD of color or who are members of other minority groups are very likely to be encountering instances and forms of “double discrimination” that no single movement is effectively identifying or actively working to address.”
“While the correlations above are clear, the extent of the connections, the direction of any causative links, and the impact of multiple systemic health barriers in the lives of PWD of color are unknown because little data respecting the interaction of race and disability has been collected and/or analyzed with those connections in mind.”
“The disability and racial minority communities cannot accurately understand how to tackle these myriad barriers and disparities without much more information on how disability and minority cultures and stereotypes, as well as additional variables such as socio-economic status, sexual orientation, and gender coalesce around health and illness.”
Imagine it, someone else makes all of your decisions: where you live, who you live with, and what your daily routine entails. This person might be a family member, but in most cases everything from the choices available to you to the final decisions made are governed by someone you don’t know.
Someone who doesn’t even know you controls your life.