Our Story: D.C. & Agitate. Agitate. Agitate. (3 of 3)

FDouglassThis is the third and final installment on our Spring Break trip to Washington, D.C. It concludes with an admonition on what those who would advocate for oppressed groups should do. 

The first installment contains the travelogue of National Parks Service sites that we visited over the course of nine days. Several of the sites gave evidence for Dr. King’s statement that the arc of the universe is long, but it bends towards justice:

  • Booker T. Washington Birthplace NM: the fight for equality through education for African Americans
  • Appomattox Courthouse NHP: the surrender of Gen. Lee in the Civil War, fought over whether a fellow man was indeed equal or, depending on what state he resided in, property.
  • George Washington Birthplace NHS & Mount Vernon: the leader of the Revolutionary War, a war fought for the colonies to be treated as an equal sovereign to the British Empire.
  • The Martin Luther King, Jr. Memorial and the LBJ Memorial Grove: the leader of the Civil Rights Movement to abolish the separate but equal society between whites and African Americans and the president who signed into law the Civil Rights and Voting Rights Acts.
  • The Belmont-Paul Women’s Equality NM: headquarters of the National Women’s Party, which led the final push of the suffragette movement for voting equality.

These sites memorialized the struggle our nation has had to go through to increasingly expand to fellow men and women the American Creed embodied in the Declaration of Independence that we are all created equal and entitled to unalienable rights. Because, even though our nation began with that Declaration, unfortunately, those in power in each successive age denied those rights to those they oppressed.

These sites are memorialized because they recognize the price in human lives to fight for these equal rights for all. But the fight is not finished, because there remain those who are oppressed by the powerful.

Of course, given the focus of this blog, the oppressed whom I am directly speaking about are individuals with Down syndrome, specifically, and those with intellectual disabilities, generally. Just to detail the injustice in reverse chronological order across the lifetime to end with the other focus of this blog:

  • Individuals with Down syndrome will all develop the physical symptoms of Alzheimer’s but not all will experience the associated dementia, yet funding remains disproportionately low for Down syndrome research, even though it will likely result in benefits for all.
  • The employment rate for individuals with Down syndrome is unacceptably low–it is not an exaggeration to say that the Depression of the 1930’s has never ended for those with Down syndrome given the low rate of employment due to insufficiently funded job training programs and, at its worst, bigoted employers who refuse to hire those with intellectual disabilities.
  • Community living options have not received a cost-of-living increase for almost a decade and a half in my home state of Kentucky and are similarly underfunded in other states, denying individuals with Down syndrome the dignity of having their own home and denying our communities of vibrant members that enhance a neighborhood.
  • Educational measures have likely experienced the greatest improvement, but going from awful to not bad is nothing to celebrate. Parents still have to prepare as though they are going into battle just to ensure their child receives what they are legally required to, namely a free and appropriate public education (FAPE) in the least restrictive environment.
  • Congress passed the Genetic Information Non-discrimination Act (GINA), championed by Sen. Ted. Kennedy, recognizing that the genomic age risked individuals being discriminated against for health insurance and hiring due to a genetic condition. But, discrimination persists with prenatal genetic testing because another initiative of Sen. Kennedy’s, the Prenatally & Postnatally Diagnosed Conditions Awareness Act has never been funded despite genetic advances occurring in the years following its unanimous passage in both houses of Congress. The discrimination further persists in the disparity in funding for prenatal testing, but not for the information resources recommended to accompany the testing, namely accurate, written information, genetic counseling, and support from peer organizations.

Pervading all of this disparity and discrimination that persists against those with Down syndrome and others with intellectual disabilities is the continuing cultural acceptance to see these individuals as less than equals and the subject for ridicule.

It was at one of the last sites that the admonition was given on how to effect change for those who are oppressed.

At the Frederick Douglas NHS, the introductory film concludes with Douglass advising a younger advocate what he is to do in the struggle for equality. Succinctly, Douglass advises,

Agitate. Agitate. Agitate.

Indeed, the changes that have come about in racial equality and gender equality required much agitation by each of those movements. Similarly, the advances in inclusion of individuals with Down syndrome and others with intellectual disabilities are the results of key moments of agitation by advocates.

However, “Agitate” is not the word any would associate with the advocacy measures taken today on behalf of individuals with Down syndrome. Rather, the efforts taken in the time of my daughter’s life instead are those of building consensus and working within and with the elites of the systems that oppress those with intellectual disabilities. This is largely due to the relative political realities that face the Down syndrome movement and the larger intellectual disabilities movement.

Unlike a racial minority or the women’s movement, Down syndrome represents a relatively small portion of the American population (and an increasingly dwindling percentage worldwide). Therefore, while everyone has a mother and everyone has had contact with an African American, there is not the same connection that would motivate those without a direct link to Down syndrome to have the same level of political persuasion.

When thinking of “Agitate” and Down syndrome advocacy, what instead comes immediately to mind is the criticism by fellow advocates and groups that should be working in unison, but too often work at odds with one another. Facebook and social media have only expanded the pool of critics from within the Down syndrome community.

This, too, is a function of the relative smallness of the Down syndrome community. As the saying goes, “familiarity breeds contempt.” For the most part, we all know each other, at least those who are seen as standard bearers and outspoken advocates. Too often, we agitate one another instead of those who are oppressing our loved ones with Down syndrome.

I write this fully aware that I am just as guilty of misdirecting my agitation. But I write this, and admit to it, in the hopes that our current leaders will follow Douglass’ admonition and agitate not one another, but the oppressors. And, just as Douglass gave that admonition to a member of the next generation, it is in the hopes that, just as Douglass’ efforts were then inherited by Dr. King’s to continue the struggle, and just as the Suffragettes of the 1800’s found a new voice with Alice Paul and the National Woman’s Party, that a member of the next generation of Down syndrome advocates will focus their agitation to fully realize what is promised both by our nation’s creed and by enacted laws: that our loved ones with Down syndrome will be fully included, fully employed, and fully respected from even before they are born until the end of their natural lives.

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