#IAmAPreExistingCondition

Rooted in Rights is putting together a video project, #IAmAPreExistingCondition, as a campaign to ensure the Affordable Care Act remains law.

You can submit your YouTube video through this form until May 10, 2017. You should think about whether you want all this information out there before doing it, though.

Click here for my video with CC – there is also a transcript. Closed captions should begin automatically when you click play – if they don’t, click the CC button.

Transcript of my video:

My name is Kit Mead, I’m from Takoma Park, Maryland.

Um, I’m autistic, I have multiple mental health disabilities, I am getting tested for and will probably get a diagnosis of Ehlers-Danlos Syndrome, which is a genetic connective tissue disorder. I also have ADHD and a couple of other things.

Without health care coverage for pre-existing conditions, I wouldn’t be able to, like – my psych meds would probably go way up, and they’re pretty expensive, and once I have the diagnosis of Ehlers-Danlos, I plan to start working on stuff for that like physical therapy and anything else my doctors recommend. And of course, living with a chronic illness just means a lot – a lot more expenses generally, and I wouldn’t be able to get coverage for like, any of it.

Because of this, I would tell my legislators that – vote no on the American Health Care Act. A bill – legislation that takes away healthcare for 24 million people is not health care coverage. It’s not protecting the people who need it most. And therefore if you vote for this bill, you are choosing to, you know, basically let millions of people die, so, vote no.

I am a pre-existing condition.

 

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Disparities in healthcare for the disabled

Health care disparities, boiled down

The issue of health care for disabled people is a heavily multi-pronged issue. In the United States (I know health care disparities are rampant and this is not a solely U.S.-centric topic, but I may follow up with more depending on sources that can be located), many disabled people live in poverty, making it difficult to access health care and health insurance. Barriers are not just economic, but also racial. Disabled people of color are more likely to experience health care barriers. Accessing health care friendly toward transgender people is also difficult.

I have watched people I know struggle with pain because doctors do not seem adequately prepared to interact with disabled people, and almost be denied lifesaving treatment due to disability and weight.* Individuals with disabilities also have symptoms chalked up to their disability. A study notes that “In general, PWD do not feel health care professionals are adequately prepared to treat them, and do not possess the skills to effectively communicate and develop trusting relationships with PWD.” The National Council on Disability reported in 2009 that “the absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers that prevent people with disabilities from receiving appropriate and effective health care.” I have read the stories of many people here refusing to accommodate them, such as informing them they don’t “look disabled enough,” or assuming that because they are disabled they have no communication.

In addition, the Disability Rights and Education Fund reported that “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.” For instance, this article covers issues of double-edged swords between hiding pain or openly suffering for black women with disabilities.

Further, in addition to not being prepared to communicate effectively, the economic barriers tend to be massive. In 2009, the CDC released a brief that in all states, people with disabilities cited economic barriers as reasons for not receiving adequate health care. In the same year, the National Council on Disability noted that people with disabilities were notconsidered a group with significant disparities in health care, which does not encourage action on the part of the government to improve healthcare for disabled people. Action is required on the part of the government to recognize disabled people as a group experiencing health care disparities.

While the federal government released a report in November 2010, Healthy People 2020, which “among its objectives for people with disabilities, Healthy People 2020 includes reducing unemployment, increasing the accessibility of new and retrofitted housing, other issues will need to be addressed by the federal government in order to provide these things, such as banning the subminimum wage for disabled people, as New Hampshire recently did so that employed disabled persons can receive more money, and a stronger focus on community integration, with increased funding for Home and Community-Based Settings.

It’s not all on the government, of course. We have to work to end stigma here as well, especially among nondisabled peers. But funding and training for physicians and those in the medical field would go a long way.

*Amanda Baggs, mentioned in the poem, has changed hir name to Mel Baggs and uses sie/hir pronouns.