Monday, August 13, 2018

Don’t even know what to title this

I don’t know what I’m going to write right now; it’s all jumbled up in my head. But I just know I need to write. I haven’t written for what feels like eons...I need to write. Forgive me if this ends up being an incoherent rambling mess. It probably will be. But maybe that’s okay, because I don’t know if I’m writing this for you or for me. I don’t think it’s for anyone in particular, actually. Anyway…

Some time ago I did something...some things that I’m not proud of. That I should know better than to do. That I would typically not do. The specifics don’t matter right now - not because I am trying to be vague, but because there are aspects to this story that involve others and it isn’t my place to betray their trust nor risk their privacy. What is most relevant is that I violated my own personal standards...trampled across my own heavily revered, deeply ingrained internal code of ethics. I don’t even know who I am anymore.

I make no secret of the fact that I am flawed. I am all too human, and I mess up. I admit that. I own that - openly. I see no value in facades...it’s just not me. Too much of the hurt I have endured in my life was allowed to survive in oppressive secrecy; I have long renounced that putrid shroud and cast off its shackles. But shadows also loom in the presence of light, in the open.

In measured doses those shadows can be a welcomed source of shade and reprieve from the sun’s gaze, but we aren’t meant to dwell in the darkness there long-term away from the life-sustaining rays of light that nourish us from within. Ultimately the light is what feeds us, what helps us to grow, to develop, to thrive. We need the light to sustain ourselves; in perpetual darkness we will wilt, shrivel, and ultimately die.


Some of the flowers I admire most are not “true” flowers. They are technically “weeds” or wildflowers. No one necessarily “plants” them; they just grow. On the sides of highways; alongside buildings; in untended fields. Even bursting through layers of concrete. They aren’t the type of flowers that appear in pretty, evenly spaced rows in perfectly manicured lawns. No one tends to them - their only watering can is the rain that pours from the sky. But their will to exist is apparent and their simple, natural beauty unparalleled. The dandelions, the sunflowers, the daffodils of the world...for so long I counted myself among them. Unadorned, unextraordinary, often unnoticed, yet resilient, self-reliant, and boldly yet quietly defiant.

For so long, I didn’t need anyone watching me for me to do the right thing. I didn’t need anyone to remind me. I didn’t need to dread facing stiff, fearful consequences as a deterrent to doing wrong. My own internal moral compass was its own incentive. Being true to who I am, my personal beliefs, my spiritual path, my promises to myself...all that was reason enough. The fact that I might let others, like my kids, like my community, down? Truthfully, probably a secondary concern at best. Fear of the penalties for wrongdoing; my comeuppance? Maybe tertiary. What was most important was living a life of authenticity. It was a core part of who I am.

It’s not that I thought myself immune to falling short. I have no illusions of perfection. It’s that I thought I knew better. It’s that I thought I had finally become the person I had aspired to be, whom I had worked hard to be, whom I felt that I had evolved into. I thought she was real. I thought she was me. I thought she had it together. But she was an illusion.

I’ve come to terms with my actions, apologized, tried to make amends, tried to re-route myself. The broken shards cannot be made unbroken. The past can’t be undone and wrongs can’t ever be fully righted. But I’ve tried to mitigate the damage. Tried to be a woman about things and salvage what wasn’t torched.

Yet still the question remains? Who am I? If I cannot adhere to my own personally defined rules and standards, then what does that say about me? What I am capable of? If I cannot even do right by my own self in the long-term, who can I do right by?

How could I let myself down like this, and how do I get past it? I don’t know if I can. I know life can and does go on. It can’t stop because I let myself down. I can’t stop either. I haven’t stopped “being me” I guess...but now what? How do I reconcile this effed-up individual with who I am supposed to be? I’m not supposed to hurt people; I’m supposed to help people. I’m not supposed to take shortcuts and circumvent the rules (unless the rules are unjust ones). How am I supposed to be able to have respect for myself ever again when even after all these years I’m still susceptible to the same nonsensical ish that I was supposed to have learned and moved on from?

What is wrong with me, and will I ever get it right?




Tuesday, April 10, 2018

“Neurodiversity Is Dead?” Ion think so. Letter to the Mad In America Editor.


(Image is an autism acceptance word cloud of multiple colors. Source: unknown)




Today I wrote a letter to the editor and the president of “Mad in America” about an ableist and disturbing article that they published on their site.

Here is what I wrote:

“Dear editor,

I am writing to express major concerns over your recent piece, “Neurodiversity is Dead. Now What?” Aside from the numerous inaccuracies it contains, it is a gross misrepresentation of neurodiversity and Autistics in particular. 

I’m a Black Autistic woman (born to African immigrants) who was diagnosed later in life. I am also a parent of both Autistic and non-Autistic children. None of my children are “Aspies” and in fact one has an intellectual disability. Others have speech impairments. My concerns are not limited to one particular “type” of Autistic. Human rights are for EVERYONE. That’s what neurodiversity is about.

Ms. Hiari conflates things in a manner that is extremely problematic. Neurodiversity is not anti-growth. We ARE anti-eugenics. But not anti-support.

There is no fault nor shame in needing and seeking respectful, meaningful supports and treatments for incontinence, self-injurious behavior, migraines, aggression, cognitive challenges, sensory differences, seizures, GI problems, or any host of co-occurring diagnoses a person might have. 

Additionally, as someone who is both Black AND of DIRECT, immediate African heritage, I am extremely bothered by the implications of the remarks about race the post makes - and how that plays into already existing, biased, discriminatory perceptions of people of color. 

As a part of the Mad Pride movement, I am bothered by this attack on the Autistic community and I am saddened that you all apparently endorse these troubling beliefs. 

I believe a retraction and public apology is in order. I don’t expect it to happen, though, unfortunately.”

I received a reply from the Mad in America president this afternoon. As I have not sought permission to post his reply to me on a public platform, I will not do so. (He was cordial enough.) However, neither his assessment of the situation nor his reply itself sufficiently addressed this problem. I’m disappointed, but not surprised.

I have other matters to attend to. I have a sick child; I have dinner to prepare; I have work that needs to be taken care of. There are people in crisis within my community (Autistics of color) who are in urgent need of support and attention. I cannot afford to squander any more spoons over this article. I tried; I failed. It’s still up and apparently its author and the MIA editorial team feel it deserves to stay up regardless of the way it mischaracterizes and stigmatizes me and people like me. I can’t change their minds and their hearts. But hopefully I can change that of others. So while I think this is a matter worthy of attention, I cannot deal with this any longer. So I am going to share with you my response to the editor’s reply to my email, and then I am going to leave this in my friends’ and colleagues’ capable hands to address. And in God’s hands too...

My reply is below:


Thank you for your prompt reply to the email I sent expressing my concerns over the “Neurodiversity is Dead,” article that you published on Mad in America. 

You stated that Twilah’s piece met your editorial standards of “trying to envision and create a more humanistic, supportive way of thinking about ‘psychiatric’ difficulties and differences, and thus about providing support/help to people who may be struggling in this way,” 

And also that 

“...we want to be open to diverse opinions about how to create a more humanistic, supportive  way of thinking (and of care).”


Humanistic can be described as: “having a strong interest in or concern for human welfare, values, and dignity.”

Supportive can be described as: “giving support; providing sympathy or encouragement; providing additional help or information

Support can be defined in this manner:

“to bear or hold up (a load, mass, structure, part, etc.); to serve as a foundation for; to sustain or withstand (weight, pressure, strain, etc.) without giving way; to serve as a prop for; to undergo or endure, especially with patience or submission; to tolerate; to sustain (a person, the mind, spirits, courage, etc.) under trial or affliction; to maintain (a person, family, establishment, institution, etc.) by supplying with things necessary to existence; to provide for; to uphold (a person, cause, policy, etc.) by aid, countenance, one's vote, etc.; to back; to second; to maintain or advocate (a theory, principle, etc.); to corroborate (a statement, opinion, etc.); to act with or to second (a lead performer); to assist in performance.


Rereading the post, and most specifically the last two paragraphs that you referenced in your reply, I am very confused how you and your staff came to the conclusion that her post was “also setting forth a humanistic vision of what might be possible.”

I have quoted the last two paragraphs of her post below (in italics). Beneath each section I have referenced portions of a position statement from the Autistic Self-Advocacy Network. I do so not to imply that ASAN is the “voice” of all proponents of neurodiversity as ASAN certainly has its critics, and they likely have valid reasons for their criticism. But the policy statement is a good, easily accessible compilation of information and I believe these statements at least are generally aligned with the concept of neurodiversity as it pertains to Autistic people on ALL parts of the spectrum. 

When I read this, it is clearly which view is advocating for a “humanistic and supportive” perspective...not Twilah’s.


It begins below.


I propose that autistic people move beyond tyrannical groupthink. 

(My commentary) Some of the terms used to describe tyranny, from which tyrannical is derived, include: “cruel, oppressive, harsh, unjust, arbitrary.”

(My commentary) With regard to groupthink, a formal definition is that of “a group that makes faulty decisions because group pressures lead to a deterioration of ‘mental efficiency, reality testing, and moral judgment.’ Groups affected by groupthink ignore alternatives and tend to take irrational actions that dehumanize other groups.”

(My commentary) Neither of these are “humanistic and supportive” ways to describe others.

We should balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges. 

“There are real challenges associated with autism and other neurological differences. The social model draws a distinction between the underlying condition, which exists regardless of cultural attitudes, and the disability, which consists of everything that goes into society’s representation of the condition. In advocating recognition of the civil rights and dignity of Autistics and others with disabilities, we are not overlooking the existence of such challenges. Rather, we are seeking to create a world in which all people can benefit from whatever supports, services, therapies, educational tools, and assistive technologies may be necessary to empower them to participate fully in society, with respect and self-determination as the guiding principles.”


We should make room for more perspectives. 

“When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.”


We should support more research into the environmental risk factors for autism so that the most incapacitating presentations can be prevented. 

“More research is needed in areas such as communication, service delivery, education, and community supports that will have practical applications for improving the quality of life of Autistic people and our families. Autism research grants in recent years have gone mainly toward genetic and other causation-oriented studies with potential eugenic consequences, while studies focusing on educational practices, assistive technology, best practices in providing services and supports, and effective supports for community inclusion have received far less funding. These skewed priorities are unacceptable.”

We should also support more research into modalities that can heal the most severely disabled among us, or any among us who choose healing. 


“No neurological type is superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of their diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. The Autistic Community includes all people on the spectrum regardless of their diagnostic category or their support needs.”


We should move towards unity with the rest of the human race rather than division, by emphasizing our humanity over our autism.

“Like any other minority group, we have the right to respectful and equal treatment in all aspects of society. Although offensive depictions of autism and disability are not the only barrier that must be confronted in the struggle for inclusion, quality of life, and opportunity for all people with disabilities, the issue is a significant one because cultural perceptions shape the reality of our lives. By challenging harmful and inaccurate representations of autism and disability, we can advance a broader and more effective agenda for our community as we seek to bring about a world in which all people with disabilities are fully included and accepted in school, at work, and in society at large.”


That’s the end of that paragraph. Before we go to the final paragraph, let’s revisit what Twilah wrote in the paragraph immediately preceding this one:

But we have to recognize that not all environmentally modified brains turn out well. Some of us can’t perform the fundamental activities of daily living independently. Some of us have are caught in a loop of sickness and self-harm and engage in biting or other types of violence against other people.


Let’s contrast that with the policy statement, which declares:

“The United States Supreme Court has declared that every American with a disability has the right to live in the most integrated setting. This requires that sufficient funds must be made available for services and supports to enable community participation.

Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access).”

Here is Twilah’s final “I know I just crapped all over you, but ‘can’t we all just get along!’” ending paragraph:

We are beautiful, we are complex, we are worthy of love, and we are entitled to integration into our communities and workplaces. We must move forward with a commitment to truth and a dedication to not only our own well-being, but also to the well-being of those with whom we interact. In embracing truth, we embrace a commitment to growth, maturity, and harmony.

And the policy statement reads:

“Every person is worthy of inclusion and respect, whatever their support needs may be. We view the Autistic community as one community, encourage self-advocacy among all people on the spectrum, and also work with parents and other allies who share our goals in the interest of ensuring for everyone the rights of communication and self-determination.

We advocate for greater support and understanding for adults and children on the autism spectrum. Within the broader context of the disability rights movement, we seek to bring about more accommodation and acceptance of neurological diversity in our society. We believe that self-advocacy is essential to this process and that there must be meaningful involvement of Autistic individuals in making policy at all levels: Nothing About Us Without Us.”

You noted that the piece has generated a lot of attention. Yes...but at what cost? Just because people are reacting to it doesn’t make that a good thing. This article has triggered and demoralized many. Myself included. And I have enough to deal with without being othered, lied on, gaslit, and treated in a despicable manner by a publication that is *supposedly* an ally of mine given that my diagnoses include psychiatric ones.

As you concluded your email, you stated, “Perhaps our own perspective on the blog was flawed. We certainly fail some times in our review of submissions. But I hope at least that you can, in this reply, see what our goals are.”

I do believe your perspectives on the blog were flawed. I think the post is very ableist, contains a number of falsehoods, falsely attributes beliefs to a community that are not held, and stigmatizes the very Autistics (i.e. those who are nonspeaking, intellectually disabled, and/or need support with ADL) she claims to be “advocating for.”  People who have high support needs like my very own intellectually disabled son, who is not what Twilah would consider in the autism “sweet spot.”


Sincerely,

Morénike


Sunday, April 8, 2018

An Open Letter in Response to Mad in America’s “Neurodiversity is Dead. Now What?” article

Today I had the displeasure of reading an article in Mad in America entitled, “Neurodiversity Is Dead. Now What?” Written by a Black woman whose diagnoses range from autism to PMDD, the article makes an attempt to point out what its author views as inconsistencies in the neurodiversity movement. There are six primary points made by the author in the article as evidence of problems with “neurodiversity groupthink that will kill the neurodiversity movement”:

1. In-group identity politics reportedly exist within the Autistic community.
2. The Autistic community’s position on autism and genetics (as opposed to environmental factors) is inaccurate.
3. The prevalence of autism has, according to the author,increased throughout the years.
4. The use of identity-first language by Autistics within the neurodiversity community is perceived as problematic by the author.
5. The author disagrees with the concept of an “inherently existing me.”
6. The author believes that “the neurodiversity movement is culturally biased at best, racist at worst.”

Typically when I write a rebuttal I like to frame my thoughts and words effectively. I also like to do significant research on the topic I plan to write about. Due to illness and time constraints, I am unable to do either of these things. As such, this might not be the most compelling rebuttal I’ve ever penned. However, I can’t go to sleep with this inaccurate portrayal floating out in the universe. It just doesn’t feel right. I have to say something...for my own peace of mind.

I’d like to preface my remarks by saying I do not know the author nor am I familiar with her work. I don’t, however, have to know her to respect her. She is, like I am, a Black Autistic woman who is a writer and an advocate. Most likely she and I have faced numerous similar struggles. I don’t agree with her opinion, but I can disagree in a manner that still affirms her personhood - and I plan to do so. My rejection of her narrative is in no way intended to be an attack on the character of another Autistic woman of color. I do, however, vehemently disagree with her opinions on this topic...but it’s more than that. Whether intentionally or unintentionally, in her zeal to discredit neurodiversity she asserts many falsehoods as facts, and that needs to be addressed as well.

There is a difference between the author sharing her lived experiences, which she is entitled to do so, and projecting those experiences onto an entire movement - which she is not entitled to do. There is also a huge difference between sharing one’s beliefs about a group and attributing one’s biased and untrue assumptions about said group. The author seems to have difficulty with these distinctions.

Indeed, the falsehoods can be found pretty much right out of the proverbial “gate.” Early in the article, the author declares:

“In reality, the neurodiversity movement is a public relations campaign that emphasizes the many positive qualities associated with some presentations of autism—creativity, increased tolerance for repetition, enhanced empathy, superior ability to master content in specific subject areas, and exceptional memory—while erasing or minimizing the experiences of autistics who are severely disabled.”

Essentially, this polarizing and inaccurate statement can be viewed as the overall theme of the article. With it, the author draws a figurative line in the sand. On one side of the line are the apparent proponents of an exclusionary, elitist, carefully crafted image of neurodiversity. On the other side, the “real” autistics such as the author. By portraying a false “us versus them” dichotomy, the author has already given us a preview of her intentions.

I’m going to refute the author’s six points, beginning with the first one.

However, I have to state that I believe there is some validity in the author’s claim that: “In order to establish an in-group identity, you must do so in opposition to others who have perspectives that are different from yours. That means boundaries for values and behaviors must be drawn, and those who trespass beyond those boundaries must be expelled from the group. I’ve watched the neurodiversity movement grow larger in numbers and smaller in vision, compressed by oppressive boundaries of false beliefs and a rampant thirst for censorship and exclusion.”

The neurodiversity movement is a small and relatively young movement within the larger disability rights movement, which is in itself a part of a larger movement for civil and human rights. While the Autistic community is only one part of the neurodiversity movement, it is a quite vocal and active part. While there is definitely much to admire of the work of activists within the neurodiversity movement, there have also been some things that I have personally witnessed that concern me. I’ve seen toxic and predatory behavior. I’ve seen in-fighting. I’ve seen bullying and harassment.

I’ve also seen support, encouragement, and unparalleled camaraderie. But these positives don’t cause me to unsee the other things.

But you know what? Some of the very same issues I mentioned with regard to the neurodiversity community exist within a number of advocacy communities that I am a part of. I’ve witnessed similarly concerning behavior in racial justice circles. In HIV advocacy organizations. In adoption and foster care reform groups. Frankly, nearly every grassroots movement that I can think of experiences these growing pains. Are they something we should permit and make excuses for? No. But do they happen? Yes - more than we would like to admit.

The neurodiversity movement is not a utopia. It’s an imperfect movement made up of a number of imperfect individuals. The negativity does not outweigh the positivity, but yes, there is negativity. That doesn’t negate the overall movement itself. Nor does the existence of some problematic people and behaviors mean the entire movement, or the majority of the movement, is some exclusive “Mean Girls”-esque clique.

Additionally, we shouldn’t ignore the fact that 1) communities are allowed to have different sectors within them and to possess different opinions from one another, and 2) some of the so-called division might be justified. Merely being Autistic doesn’t make someone a good person. You can be Autistic and still be ableist, or sexist, or racist, or classist, or who knows what else. Maybe you’re abusive. Maybe you’re transphobic or Islamophobic or anti-Semitic. Maybe you’re just a huge freaking jerk. No one HAS to like you merely because you share their diagnosis. There are people in the Autistic community that I am willing to admit that I straight up don’t like. They’ve done questionable, abhorrent things, and I don’t respect nor like them. I’ll fight like hell for them to have their human rights, but they’re never going to be any friend of mine. The author seems to ignore that there could be some people who have been ostracized by the community for valid reasons.


On to the second point. I’m actually not going to spend a lot of time on this one. And while it is cushioned with what I assume is supposed to be an impressive new spin on an old tale, there’s little that’s novel here. The tired, ages old “nature versus nurture” argument. Genetics versus environment argument. The “born this way” or “turned this way” argument. Like I said, nothing new here. This discussion has been rehashed more times than I can probably count, and it will continue to be a hot topic for some, but not for me. I believe in science. I believe in facts. And although anyone can “cherry-pick” a handful of studies to try to prove a dubious point, I prefer instead to rely upon decades of credible, peer-reviewed evidence instead. Evidence that clearly demonstrates the genetic component of autism.


The third point is another one that caused me to shake my head. If I was trying to poke holes in a movement I would have personally selected stronger points than these. But oh well. This, too, is another argument that has been around for quite some time; like the author’s second point, this one is another that autism conspiracy theorists are fond of. It’s the claim that what we know as “autism” isn’t really that - and that we are in the midst of an “autism epidemic.” The author cites statistics on the increase in prevalence...but she fails to address how modern advances in diagnostic tools, exponentially greater public awareness of autism in recent years, and the sad but unfortunate truth that in previous decades Autistics were frequently misdiagnosed and institutionalized easily explains this disparity. She expresses disbelief that there could be a substantial number of misdiagnoses in the past despite credible and readily available information that indicates otherwise. If I was not so tired I would include links that support my claim. But there can be easily found via a simple search.

The fourth point deals with identity first language. The author considers this to be an “over-identification.” Additionally, to try to prove her point she makes false claims about other communities that tend to utilize identity-first language, namely the Deaf community.

I’d like to clarify that within the neurodiversity community it is widely accepted that each person chooses how they wish to personally identify. The fact that many Autistics prefer identity-first language does not rob another person’s valid right and choice to self-identify as a “person with autism” (using person-first language) rather than as “Autistic” (using identity-first language). The Autistic community, again, is a part of the neurodiversity movement; we are not the movement itself. There is no consensus within the overall neurodiversity movement as to how neurodiverse individuals should identify themselves because it is a matter of personal choice.

The same can be said for the larger disability movement (and person-first language is used very frequently within many respective communities within the disability community). However, the author’s words seem to make the dangerous implication that the use of person-first language is “healthier” - despite referring to her OWN self using identity-first language throughout her article (she calls herself a “Black woman,” not a “person with blackness or femaleness”).

When Black people, queer people, and other marginalized individuals decided to reclaim and proudly identify with terms that had previously been used to disparage and “other” them, it was a radical act of strength and self-acceptance; it is for those same reasons that Autistics do it. It is not “limiting” at all; it is LIBERATING.

The fifth point seems to be another example of the author projecting her own opinion on others and assuming it to be a fact. She states: “We have no inherent, independent, unchangeable, enduring selfhood as such. To cling to a false concept of an inherently existent “me,” especially if any aspects of that “me-ness” can be hurtful to or cause division from others, is a very destructive idea.”

While the author is free to form her own opinion on this topic, there is a plethora of literature about conscious and subconscious thought, the self, and the complex internal world of humans that contradicts her assertion. Respectfully, the author is not an expert in the field of psychology, neurology, or sociology; she is only sharing what *she* thinks. This point is easily refuted.

With regard to the sixth, and final point, about racism and/or cultural bias within the neurodiversity movement...as a Black Autistic, I have to say that on its face, this claim has merit. I’ve spoken extensively about the intersection of autism and race. The Autistic, and the larger neurodiversity community is not all-White; there is indeed cultural diversity. But is it enough? Ummm...nope. This is a cross-disability issue as well (hence Vilissa Thompson’s viral hashtag #DisabilityTooWhite). And it’s absolutely a social justice issue. But to specifically address the neurodiversity movement, no, it’s not as inclusive and ethnically diverse as it should be. There has been progress in this area, and there are absolutely efforts underway from both POC and White allies to improve things, but there’s certainly no argument from my end that there’s certainly a way to go before this is adequately addressed.

However, the author doesn’t seem concerned about these specific, and legitimate areas of concern. She instead latches onto autism rates in the Somali-American community and a study about the likelihood of autism and intellectual disability co-existing as well as claims of how autism “presents” in communities of color.

I’ve been a person of color my whole life. Specifically, a Black one. More specifically, an African one (both of my parents were immigrants who moved to America in adulthood). Although I am West African, not East African like Somali-Americans, there is much that I can identify with as a fellow African (especially since I was born in the Twin Cities, which has a massive amount of Somali immigrants and Somali-Americans and is one of the hubs for Somali-American Autism research).

I have a HUGE problem with claims that autism “presents differently” in people merely because their skin has more melanin. I think it’s more about how autism is PERCEIVED in such individuals than a drastic “difference” in presentation. There’s tons of data about disparities in diagnosis rates that backs this up. Children of color who are Autistic, Black/African American children in particular, are much more likely to be misdiagnosed. And if/when they eventually get diagnosed, it’s significantly later than their peers. This isn’t even touching disturbing public school statistics about children of color and disability nor studies that clearly indicate the existence of provider bias and how people of color are adversely impacted.

Don’t get me wrong. I do think that Autistics of color have vastly different life experiences, and in some cases, vastly different outcomes than our White peers. I’m not subscribing to the pipe dream that “we’re all the same.” We are, and we’re also not at all. I get that. And as the author implies, I think the fact that the face of autism as far as society is concerned is a White cisgender male is a problem. It erases every one of us who doesn’t fit into that category. That’s a legitimate problem. However, to twist that argument and try to handcuff it to ableist and racist falsehoods about functioning labels and “autism severity” with regard to race is completely unacceptable. Autism is a pervasive developmental disability. It can exist independent of or alongside any number of diagnoses. People of color will have unique strengths and challenges that differ from White Autistics, but we're not inherently “more severely disabled” than they are, and it isn’t “groupthink” to state that truth.

The author states toward the end of her article that “stranger on the internet” shouldn’t judge her for her efforts to “heal myself of this profoundly debilitating condition.” That loaded phrase encapsulates the author’s viewpoint. She perceives herself to be affected in an extremely negative way as a result of autism, and as such she refuses to accept that there can be any validity in others’ choice to embrace both the positive attributes and the challenges they have as Autistic people. The author pleads for the neurodiversity movement to be inclusive of dehumanizing and pro-eugenic perspectives with no acknowledgement of how doing so would be akin to Autistics admitting we don’t deserve to exist.She negates others’ experiences and disregards any struggles they might have in the same cavalier, dismissive manner she accuses them of.

Neurodiversity is not dead. Equality doesn’t get “old” to those of us who are fighting for it. Mischaracterizations and outright lies about what we stand for won’t kill us off. We’re here, we’ve always been here, and we ain’t going anywhere.

Autistic activist Shain Neumeier wrote eloquently about neurodiversity in a February 2018 article. It’s a shame that the author did not read it. I’d like to end this post by quoting Shain’s words about what neurodiversity is and isn’t:

“Neurodiversity isn’t a list of words or slogans for people to use or avoid.  It’s a social justice movement, with the ultimate goal of vindicating everyone’s inherent worth—and thus their right to enjoy inclusion, freedom, and the supports that allow for both. For decades, autistic people have been in the trenches, working to end our confinement and segregation in institutional settings, to prevent schools and treatment facilities from abusing us, and to call the ethics of eliminating our community through “cures” or prenatal testing into doubt, among other goals.  This has included organizing boycotts of organizations that stigmatize or discriminate against us, advocating for state and national policies to increase access to community-based services, and publishing accounts of how the abuse many of us experienced in the name of treatment has affected us in hopes of ending it once and for all. Our guiding vision is fundamentally and categorically incompatible with support for coercive treatments like involuntary sterilization, as well as with the other beliefs and presumptions of incompetence on display in To Siri with Love.

The autistic community can only start to let our guard down and fully trust in the progress we’ve made so far once our would-be supporters have fully internalized this, and once they take their commitment to fighting with us for our self-determination, well-being, and equal worth anything but lightly.”


Saturday, March 3, 2018

Submerged in quicksand (depression)

When I was a little kid my brothers and I were really fascinated by science. We devoured old copies of National Geographic magazine and various documentaries on the Discovery Channel. We pestered our mother to identify the organs and bones that were visible in the food (i.e. chicken, beef, fish) she was preparing. We examined our urine and feces before flushing the toilet and tried to predict what they might look like the following day(s) (i.e. shade, consistency) based upon what we had consumed. Yes, we were weird kids. No, none of us are neurotypical. (And yes, 2 out of the 3 of us got degrees in a science-related discipline.)

Science wasn’t my first love, though. Literature was...I loved reading and writing. Science was very interesting, but given the choice between a book on science and some newly released fiction, the fiction would win out every time. However, to this day I am still intrigued by science and technology even though at the core I’m more of a liberal arts/social sciences kinda gal.


In early elementary school I recall one of my teachers talking to my class about quicksand. Most of us had observed some movie and/or video game where the lead character found themselves stuck in quicksand. The person would struggle viciously to wriggle free only to find themselves sinking faster and faster...often up to their chin. However, just when all hope seemed lost and the person seemed destined to perish, they would spot a vine or a branch nearby, grab hold of it, and swing themselves free in what seemed like a Herculean effort.

Lies, our teacher said.


Image of the palm of a hand sticking out from quicksand. Credit: National Geographic


She told us such dramatic rescue scenes might capture the audience’s attention, but it was not realistic. The best thing to do, she informed us, if you ever find yourself in quicksand is to remain mostly still. Should you have to move, make very small, slow, deliberate movements. Your goal is get yourself to the point where you have freed yourself enough to where you’re no longer as stuck. Once you can move a little and you feel like you’re at or near the surface, then stop, lean against it, and wait. Be still and calm, she said, because with time you will rise above it completely and will be safe.


I’ve never forgotten her words. At the time I thought that perhaps this advice would be useful for me if I ever found myself in peril while camping or something. (Fortunately, that never happened.) In recent months, though, I have realized that it is a perfect analogy to describe life with major depression from a neurodiversity perspective (albeit an emerging/still developing perspective in that regard, not a strong one as I have not as easily come to terms with depression in the way I have autism, ADHD, giftedness, or my other diagnoses).

I was diagnosed with depression for the first time at 12 years old. I don’t know if I’ve ever shared that fact publicly before; most likely I have not. In recent years I have been open about trying to navigate my life as a person with various diagnoses, including this one, but I have not shared about the length of time I have lived this way. Essentially, it has been the majority of my life.

Technically, I got the “label” at age 12, but most likely depression had been present long before that. However, at that point my parents sought psychiatric help for me for the first time - after they found the suicide journal I had been keeping for nearly a year (hidden inside a yellow two pocket folder that I’d secretly nicknamed “Celie” after the protagonist from the Color Purple which was my favorite book at the time). A few depression screenings and appointments later, we received my formal diagnosis. Over the years (in adulthood) others would be added. But that day, years ago, I learned the name of the element that I seemed submerged, that I had been submerged in, movements restricted, for as long as I could remember while others around me appeared to ambulate freely.

Depression.

There’s so much I could write about this. I have written about it some here and there before, mostly on social media. It’s not an easy thing to talk about. Black women are expected to be strong. To be the pillar of our families and our communities; to have it together. In fact, as I write this, my heart is bursting with pride that the March for Black Women, coordinated by local leaders from Houston Rising, Black Lives Matter Houston, Pantsuit Republic, Women and Allies and other grassroots advocacy groups in my city, is underway. There is SUCH a need for something like this in our city, and it had been my intention, as a Black disabled woman, to be there. But today, like many other days, I cannot break free of the quicksand. So I march in spirit with my Black sisters and with our allies, and I send my love from within the walls of my home. Today, like many other days, I want to do more, but I cannot. Today I must lie still in the quicksand that threatens to envelope me or else I risk my life.

That stereotype, which in many ways I have imposed upon myself, can be harmful. Can be deadly. Do Black women tend to survive, even thrive, and make things happen even in the face of complex, systemic obstacles, injustice, trauma, discrimination, and disregard? Yes, we do. Are such conditions healthy for us? No, they are not. To me, it isn’t contradictory for me to state that we need to be both celebrated for our successes and provided support and resources to mitigate our barriers. To me, it isn’t contradictory for me to state in one breath how grateful I am for Nisha, for Kandice, and the other queens who are involved and in the next breath to say that I need a mental health day and am going to spend the majority of today, and maybe tomorrow, in my bed. To me, it isn’t contradictory for me to state that yes, Black women are strong, but at the same time the pressure that our families, that our own expectations, that ableism, that society in general places upon us erodes that strength, minimizes and sometimes altogether ignores our legitimate need for help, and fosters a mindset and behaviors that are counterproductive to our individual and collective emotional health. (And please note these remarks are NOT about this march - which I am in support of #TrustBlackWomen, or really about any other specific group or event in particular; just life.)

I am both strong and weak. I have accomplished and I have failed. I am a living duality. I can only be me. Even what I want to be, who I want to be, I’m not her yet. I might never be her, but God as my witness I’m going to keep striving...and to get there requires honesty, authenticity, transparency. I share a lot about my life because I hope it can help someone. Though I reveal a great deal, I do hold some things close, keep them inside. This is something I’m letting go of, opening up about. Peeling back another layer. It is raw, unplanned, unrehearsed, unedited. Like much of my writing is. I wake up and I feel like God is prompting me, “Write. Get it out. Let it out.” And I do. I just go with it. Maybe it will come out like an unfiltered, disjointed, hard to follow word salad you find unpalatable. I don’t know, and I can’t care. I just hope that whoever this is for (aside from me) will be able to follow. Will be able to understand…

In the last few years, my family has faced enormous challenges. A costly, lengthy legal battle that threatened to destabilize our family. A cancer scare. A miscarriage and subsequent health challenges that followed it. Not that my life has ever been easy (is anyone’s?), but these last few years stretched me and pushed me and tested me nearly to the breaking point. Only God knows why I didn’t lose it, or why anyone, when facing seemingly insurmountable difficulties and seeing no way out, doesn’t just fall apart. It’s no secret that I have struggled in recent years. Have felt depressed, even suicidal, have sought therapy and medication to manage symptoms of depression, both of which I still utilize. I’ve written about all of this. And one thing that has made it easier is that when life gives you lemons, few will judge you for grimacing at the sour taste while you gulp down your lemonade. People understand. People care. People don’t look down on you for not having it all together when they know you’re in the middle of an emotional tsunami. They get it.

But what about when that tsunami passes? That situation gets cleared up? A reasonable amount of time has gone by, enough to expect most people to have come to terms with their circumstances, whatever they might be. What about when you still aren’t okay? You still can’t really function optimally (according to societal expectations)? What then?

Depression for me isn’t situational. It isn’t solely because of bad things that have happened to me (though it is worsened by those things). And it isn't something that is recent. It is lifelong. Like my beating heart, my ever-racing brain, my ebony skin, it is always there. I don’t know me without it, I don’t know life without it. I often don’t understand it. And truthfully, in the interest of being real, I usually don’t like it, not one bit, other than the lessons it has taught me. But the truth is, my truth is, for better or worse, for richer or poorer, in sickness and in health, it’s always been around. It’s always been there. And I’m beginning to think maybe it will always be there. Maybe I’ll never “beat it, overcome it, conquer it” or whatever curebie-esque term is the flavor of the month. I might be like this, living with this, all my life. It doesn’t seem like it’s ever going to go away. So what am I going to do? Am I willing to accept it?

When I think about the quicksand scenario, it boggles my mind. Because seemingly the most effective thing to do is the thing that seems to be the absolutely least natural thing to do. To me it would seem that when you find yourself sinking lower and lower, losing control and unable to regain solid footing, that instinctively I would flail around, try to force myself free, try to find a solution to get me out of this mess. To pull and pull and pull and pull; to fight; to yank; to kick. I would want to to try to DO something. And if that proved impossible I would panic. But to just be still? For a long time? Waiting? Goodness, no. I can’t even imagine doing that. How anxious it would make me to resort to doing so. To feel like I wasn’t doing enough to free myself from this situation.

But all my efforts would be in vain. I would be expending all of this energy on actions that are ineffective and in the end I wouldn’t be any closer to being free. In fact, I’d be worse off that I started. I would be causing myself to sink lower and lower. And I would be exponentially increasing my risk of drowning in that quicksand. Being overcome and defeated by my circumstances as a result of the manner I chose to try to address/rectify them. I would be endangering my own life. Panic = perish.

Contrasted with if I took the approach that isn’t glamorous, isn’t the obvious choice, isn’t swift. Which would require me to try to be intentional and strategic. To be calm even when everything inside of me felt panicked. To resist the urge to do what has worked for many other scenarios I’ve gotten myself into.

To rely NOT upon inaction, but upon unconventional action. To move slowly, carefully, and cautiously through something scary that had me trapped despite not seeing a way out. To wait, to watch. And when I feel some progress, finally, rather than to muster all my strength and try to break free, to let go and lay back, trusting that I will float above what has had me bound and that in doing so I will hopefully find myself freed, or if not freed, at least floating high up enough to be less restricted and able to breathe and move more freely...enough to manage, to cope.

It’s hard when the solution seems to be to do something that feels like you’re not doing anything. Even though you are.

But the fact of the matter is that not only is most quicksand pretty shallow and unlikely to be found in depths likely to endanger a person, also the density of the human body is lower than that of quicksand. Quicksand’s density is nearly two times greater than ours. So even though it’s frightening and it is something that is very real, statistically it is unlike to kill us. Trap us? Yes. Inconvenience us? Yes. Cause distress and pain? Yes. Delay us? Yes. Cause problems for us? Yes. Lead to scenarios where if we are not able to obtain meaningful help and supports that we are at a much higher risk of finding ourselves in scenarios where we are in danger of being harmed or killed? Yes. Increase our risk of contemplating and potentially attempting suicide? Sadly, yes. But outright kill us itself? No. Not likely...unless we increase our own risk through the way we choose to handle things, including the things we cannot control. (Note: this analogy is not in ANY way a judgment or observation on suicidal ideation nor suicide nor is it intended to be taken as such. As someone who has struggled with that myself, I would NEVER belittle nor shame anyone for that. Though I'm speaking colloquially, I perceive that as a related, but separate matter.)

But even as I type this, I can feel the urge to struggle. To fight. I can hear the internal voices telling me I’m not doing enough. That I need to get myself together.  That surely I have to do SOMETHING, not just remain still.

I’m submerged, and have been for years. And whether I will sink farther inside it or I am able to slowly rise to the top, above it, depends upon the movements I make now and that I make next. The same goes for you. Will you thrash about in vain or will you rise? Today, I choose to rise. Tomorrow I hope I choose the same.


Sunday, September 10, 2017

No fate but that we make...questions about the way forward




(Note: although I "published" this post on my blog in September 2017, I actually began drafting the first part of it a few months ago...sharing that detail in case any parts of the post seem "dated.")

When I was a little girl I liked the "Terminator" movies. (And I liked the Rocky movies, and I liked watching Transformers, reruns of Good Times, and Jem. And?!?!?!) Sarah Connor, Kyle Reese, John Connor, the futuristic robots...all of it fascinated me.


Near the end of the second Terminator film Sarah is reflecting over what the future holds for her, for her son John, and for the world.  For over a decade Sarah's singular focus had been on preventing a future laden with destruction from occurring; now everything was new and uncertain. The future, once bleak and doomed, was now full of question marks - unwritten. A blank slate.


In recent times, that sentiment has resonated with me. For the nearly three years preventing a disastrous future occupied much of my thoughts, energy, time, and finances. Like Sarah Connor, the grim possibilities this dreaded future presented were frightening and unacceptable to me and the only rational response was for me to resist with every ounce of me even if a positive outcome seemed unattainable. And yet now it is here. Full of question marks. Unwritten. A blank slate.


"No fate," young John Connor explained to the reformed Terminator in one scene, "No fate but what we make. My father told her this. I mean, I made him memorize it up in the future as a message to her...the whole thing goes, 'The future's not set. There's no fate but what we make.'"


(You can view a video clip HERE that is ~2.5 minutes about why that message about preventing an apocalyptic future was so significant to Sarah. Content warning: No speech, just music. Also lots of death, destruction, violence, nuclear war, and just plain old doom. The movie is still good, though. And because Sarah is just bad @$$, HERE is another clip with her - same content warnings apply.)

(Image is a carving of the words "NO FATE" into a wooden surface. The knife used to carve the words is visible, lying to the upper right corner of the words. Image is black and white/grayscale. Image credit: Terminator Wiki/Benzinga


For Sarah, that concept fueled her and allowed her to persevere through seemingly hopeless circumstances...the idea that future is not necessarily pre-determined; that we can impact what is to come, what is to be, by the actions we take in the present. But what does it mean for me - now? What does it mean for others? What does it mean for the cause, for my people, for my family, for my community, for the future?


The short answer is...I don't know yet. I really don't.


I'm a Christian. So this is probably the part of the post where I would be expected to relate some complex tale of hardship and explain how God still manifested light in the midst of it. This is also probably where I am supposed to be gushing about how much I ALWAYS KNEW God was going to come through for me. How much people need to rely upon and trust in God's Word. How faith and grace can transform near-impossible situations. You get the point.


And there would be nothing wrong with any of those sentiments...except that if I was to utter them, I would be dishonest with both you and myself. Because though I do believe God has been present in my life and has carried me through immense challenges where it seemed impossible to go on, I didn't always know what was going to happen. I hoped, and I prayed, and I worked. I hung on. But I didn't know for certain what the outcome would be. I had no way of knowing, though I certainly hoped. But what was to come...well, that was a huge question mark. An unknown.


And I still don't know. I don't. Some people seem secure in these things. They don't struggle with "what if" thoughts and with doubt and with fear and with anxiety and with the fact that they just don't know what is going to happen. I, however, do. I won't give up. I won't turn away. I will keep going and keep fighting. But I have more questions than answers. And even when the clouds seem to be lifting somewhat...even when the pain is not as acute and I am able to not only imagine, but perceive that the weight is subsiding a little in my own life...even when I give God thanks for visibly working in the storm, I still don't know what the future holds. I still don't know what to expect. I still don't know what comes next. I still have questions.


Questions like how to deal with times when circumstances aren't as bad as you know they can be, but they still aren't good?

And/or when your personal circumstances, though certainly not optimal, are tolerable, but the circumstances of those around you are even worse?

How do you get strong enough to not only maintain your own survival, but succeed in providing meaningful assistance to others to do so?

How do you ensure that you are contributing what is truly needed, that you are empowering others to ponder, seek, express, and own their own needs and solutions are simultaneously being background support, not unintentionally taking over in one's zeal to truly help?

And how to know that you're feeding adequately into the lives of others?

And that you're also developing and not losing yourself?

And how do you do any of this in an authentic way that builds some sense of hope for facing the future while also openly acknowledging that loss hurts, brokenness exists, life disappoints, betrayals sting, people die, trauma scars, and good things end?

And what about when you fall?

When you totally eff up?

How do you mitigate the damage your actions and/or words have caused while extending yourself some grace?

How do you actually revisit hurtful things in your past to "learn" from them in a meaningful way without triggering or re-traumatizing yourself?

How do you reconcile the fact that there are some really jacked up and unsafe people in our "safe spaces" that you will never fully succeed at avoiding because they have embedded themselves into our communities and may never be able to be extracted?

And that sometimes these unsafe, maybe even toxic people actually do good work and/or help others even though you know for a fact deep down they're still POS's? Do you take the good with the bad?

How do you deal with the fact that some of your ways, your habits, your coping mechanisms, your thought patterns, etc are likely unhealthy even though they technically work?

How do you unlearn, truly?

How far can we get without knowing? Without answers? Maybe no one knows. Maybe we'll never actually know?

Is the way forward to accept that we will never really know? That there is no fate except that we make because in order to make it, we have to continue our voyage with what little we know and what little we have, aware that part, maybe a large part of our path appears to be shrouded in shadows and uncertainty?

Monday, July 3, 2017

Second chances? Hell to the naw!


I'm one of those people who fail to respect their own boundaries. The type that falls prey to wishful thinking, to hopefulness, to forgiving too easily. I advise others not to do this, but I struggle to internalize this concept in my own life. So while I am not a big fan of "Do as I say, not as I do," that is basically the message I'm going to convey in this post. That even if I am not a good example of this, I still think it's important. More than important; it can be life-altering. And that message is:

As a rule, don't give second chances.

You can forgive. You can let things go. In fact, it's often beneficial for you to do so, as harboring that pain and those emotions over how you were wronged weighs you down more than the person(s) who wronged you. Try, if you can, to shed that baggage, or at least as much of it as you are able. Free yourself to live, to learn from the experience, to grow...to progress in life. But do not give users and abusers entry back into your life. Give people only one chance, and if they blow it, save your next chance for someone/something else. Do not give them a second chance - period. Screw that.

I don't care how truly "sorry" they are and how much they have supposedly "changed." Let them be sorry somewhere else and let them demonstrate the extent of their newfound change with someone else. It is not healthy for you to place yourself back in harm's way for someone else's gratification. The risk is not worth it. The likelihood is that at some point you are going to be hurt again, betrayed again, lied to again, disappointed again, let down again. That's what users do - they use. That's what abusers do - they abuse. Maybe intentionally; maybe unintentionally...what does it matter, though? The "why" won't provide you with any resolution or relief from your hurt.

I like to see the good in people. I like to believe that people can change. I like to believe that people can be redeemed. And maybe they can.

But that doesn't mean that you have to allow them back in. Let them be changed over there - beyond the fence. From a safe distance. Not up close. Not here with me and mine.

You see, when you let people in, you are vulnerable. You are accessible. You are unprotected. They have proximity and opportunity to do damage that would be inconceivable from a distance, and worse yet, you gave them license to do it by allowing them inside. If they have hurt you before, they do not deserve a chance to be able to hurt you again. Because almost almost always they will. And when they do so, they will exonerate themselves. Somehow it will be your fault.

If you are a person of faith, and a Christian in particular, you might be especially in danger of violating your personal boundaries in an attempt to reconcile with others. Don't do that. Don't fall for that. You have a right to say, "No," just like anyone else. You have a right to be cautious just like anyone else. I don't care how many Bible verses they quote and how contrite they might seem; some of the most untrustworthy, harmful people you will meet are those who profess to be followers of Christ. Jesus said that He came that you might have life, and life more abundantly. He never said anything about you having to endure manipulation, hurt, and deceit for others to relieve their guilty consciences. You don't need that, and you don't have to take that. You deserve better.

But it's not just people of faith who tend to find themselves in these predicaments. Many of us do, regardless of our background, walk of life, or our different pasts. For some reason, we somehow suspend our better judgment when it come to some of the most fundamental elements of caring for and looking out for ourselves. We might do a phenomenal job at advocating for and with others, but we all too frequently suck at being able to do the same for ourselves, even thought we should know better.

For example, I recently compromised my standards and allowed an individual back into my life who claimed to have been transformed from within. This is someone from my past who had repeatedly shown that they were unreliable, untrustworthy, dishonest, and dangerous. However, I will admit that even to the trained eye, this time they really, truly *seemed* to have changed for the better. They talked a good game and seemed sincere. They weren't though; they were the same POS that they had always been. They just knew how to mask it better now, and had honed their ability to deflect, conflate, and manipulate almost to a science. Of course they were dripping with "God" talk too. What hypocrite would be complete without that part?

As I contend with the aftermath, I now have to acknowledge that none of this could have occurred without my consent and participation. Somehow I did not value myself enough to prioritize self-protection and chose to elevate the emotional needs of another above that of my own - despite having sufficient previous experience to alert me that this was not in my best interest. Yet here I am...again. Twice bitten, thrice die...as I will die before I ever make that mistake again. And I don't want you to make it either. It can so easily be prevented...it can so easily be avoided. All you have to do is not give second chances. Why is the teeny, tiny, microscopic, practically non-existent possibility that they might actually be kinda okay worth more than your psyche, your mental health, your heart, your boundaries? It isn't.

We have only one life. There is only one you. You cannot be replaced, and in some cases, if you suffer too much damage you cannot be repaired. You have value. You have worth. If there is only one of you, why give anyone a second chance at anything that has to do with you? One chance is more than enough. Whatever they choose to do with that chance - use it wisely or squander it - is beyond your control. But you CAN control whether you will grant an encore to someone who has proven themselves to be unsafe. And you should choose not to do it. Because the *slim* chance that they will actually not screw it up this time is not worth the huge probability that they will f*<k you over again, like they did before - and will find a way to blame that on you, too.

No second chances. If they don't do it right the first time, they aren't entitled to an opportunity to try again. That's not being unkind, unforgiving, or unrepentant. That's simply survival.

I'm not saying that they should never get a second chance. We ALL mess up; we've all gotten second chances, third chances, fourth chances. I'm not saying that no one will ever get it right or that people never change. They can get a second chance in life. But why should it be with you?

It shouldn't.

Let them reinvent themselves somewhere else with someone else.



Text reads, "Everybody deserves a second chance, but not for the same mistake." Image behind the text is of a busy street in traffic viewed through a rain-streaked window. Photo credit: Love This Pic


Thursday, June 15, 2017

Love is NOT enough: choose you


I used to have a pair of earrings that I absolutely loved.

These earrings were perfect. They were casual enough for everyday wear yet elegant enough for special occasions. They were long enough for me to be able to feel their “swish, swish” sound when I moved my head, but not too long. They were lightweight enough not to create excessive pressure on my earlobes, but heavy enough to remain in place without twisting or flipping around. They were affordable enough for me to purchase them, but not so much that they looked gaudy and cheap.

I loved their smooth, sleek texture and would often run my fingers across their surface. I also loved how they glinted in the light - not overly shiny and showy like some jewelry, but just enough to highlight their simple beauty. I loved their shape and how they were just the right width that I could wear my hair either up or down and they could still be easily seen. They were so pretty, and I loved how they looked, how they made me feel, and how they felt on me. I wore them everywhere. They were my favorite, favorite earrings.

But there was just one problem: my earlobes. You see, I have a nickel allergy.

I’ve had this allergy nearly as long as I can recall - longer than I recall, in fact. My skin reacts to nickel exposure pretty severely, I cannot tolerate having nickel against my skin for very long because it causes painful swelling, peeling, and sores. For this reason I tend to avoid costume jewelry because it is much more likely to affect me. Gold jewelry, especially 18, 22, and 24 karat, is safer for me, as is sterling silver, platinum, and other jewelry that does not contain nickel. However, I really wanted to wear my earrings - even though when I purchased them I realized that they were not made of gold and I knew a reaction was highly likely. I just decided to try to protect my ears as best as possible. I couldn't pass them up; they were too nice. They were such a perfect fit for me, it seemed. Even though other earrings of this type had proven to be problematic for me, I still really wanted this one pair - just this one.

I was told by someone that if I coated a portion of the earrings with clear nail polish and then let them air dry, I should be protected. I was excited to learn that trick, and I tried it. At first, it seemed like it might be effective. But I quickly discovered that it was not. It did work somewhat in that it slowed down the allergic reaction, but it did not prevent it from occurring. It only delayed the inevitable.

I tried to just wear the earrings sporadically rather than wearing them on a regular basis, and I also tried to wear them just for short periods of time and then take them off after a few hours of usage. But neither of these techniques worked well either. I still had painful, unpleasant reactions. I might have had them less frequently than when I wore the earrings practically daily, but I couldn't deny that I still had them.

I tried to just ignore the symptoms, to just “press through” and endure the pain so that I could still wear the earrings. Since it was clear that the pain couldn't be prevented, maybe I could just endure it. I was a strong person, right? Not a weakling. Surely I could handle some displeasure, some discomfort? I knew that the allergic reactions were unpleasant, but the trade-off was not having to refrain from wearing my favorite earrings...wasn't it worth it?

So I wore them, knowing what was going to happen. And it typically happened like this:

  • I would put the earrings on. At first, I would feel nothing other than the sensation/pressure of having something inside of my earlobes. But no pain.
  • Before long there would be a growing feeling of heat. It seemed to originate at or near the holes where my ears were pierced and then radiate outward down my earlobes, both front and back.
  • There would be a tightening feeling, also beginning near the site of my piercing and spreading, although not spreading as far as the heat.
  • Eventually I would grow accustomed to the heat, and although it was still there, I could ignore it.
  • My earlobes would begin to itch severely, especially around the piercing site (front and back side of the hole). Sometimes the itchiness could be alleviated by lifting the part of the earring that was inside my pierced hole up and down, up and down. Other times I might have to move the earring carefully aside and gently scratch the piercing site. If neither worked, I searched for over the counter remedies that could also help me to feel less uncomfortable.

I loved the earrings, but I couldn’t not see the damage that was caused when I wore them. How they caused my earlobes to become noticeably inflamed and reddish in color (and I’m a dark skinned Black person, so it takes quite a lot for any part of my body to become visibly reddened). How my earlobes would swell in size. How my earlobes would not only itch uncontrollably, but throb in pain. How I would develop small blemishes and/or bumps and unsightly discoloration around the piercing site. How when I removed the earrings there would be blood, and sometimes drainage (possibly pus? Ewww). How my earlobes would remain in bad shape for quite a bit of time afterward even after I’d taken the earrings out.

Even removing them was not enough to undo the damage that they caused. The toll that they had taken on my body lingered for weeks even when I had no jewelry on at all, almost like scarring.

It was difficult, but I eventually had to come to terms with the truth that no matter how much I loved these earrings and no matter how much on the surface they seemed perfectly made for me, they were not good for me. The evidence was there that time and time again every single time that I wore these earrings they caused me tremendous pain. It didn’t matter how nice they looked, how they made me feel about myself, how they boosted my confidence and made me feel ladylike or whatever. It didn’t matter how long I had owned them, how much money I had spent on them, how much effort I had gone to in order to still try to find a way to wear them, how little interest I had in any other pair of earrings. None of that mattered.

What mattered is that no matter how much I loved wearing these earrings, to continue to do so was to choose to keep inflicting pain upon myself.  And eventually I had to “wake up” and face reality and realize that it wasn’t worth it. Did I really want to risk developing sepsis, an infection, permanent scarring, possibly the need to amputate a portion of my earlobes, or whatever potential risk factor awaited me simply because I refused to give up these earrings? I had to decide which one I would choose - something outside of me that I loved even though it was harmful for me, or the actual me...my health, my longevity, my best interest. I had to choose me.

I had to let those earrings go.

I couldn’t keep them in my jewelry box either, because to see them would be tempting myself to want to put them on “just for a moment” and I knew that wouldn’t be good for me. Whatever good memories I had wearing those earrings, whatever residual good feelings, whatever nostalgia I had...I couldn’t hold onto that and still hold on to me at the same time. I had to discard of those earrings completely, never to be seen, worn, or located by me again. It was the only way.

But you know what? The thing that I didn’t realize is exactly how much those earrings continued to affect me even when I was no longer wearing them and even when to the naked eye it seemed as though my earlobes had finally healed after a few weeks had passed. At first there were no obvious signs of the internal damage all of those instances of wearing the earrings had caused, but in time the fact that there was lasting damage became readily apparent.

Because of those earrings, my supposedly-healed earlobes were now all jacked up on the inside. They were ultra sensitive and they were extremely susceptible to injury even when handled with care. They became inflamed easily and they took much longer to recover than they had in the past. They were so weakened and delicate now, even though they looked the same as before on the outside. They had been changed by that experience.

Those earrings also made it hard for me to be able to wear any earrings at all. For a long time I couldn’t have worn any earrings even if I had a desire to because there was so much damage done to my earlobes by those earrings. Nothing could have gone inside my earlobes until they had a lengthy period of rest and healing, earring free.

Then I finally healed. Technically, I could have started wearing earrings again. But I didn’t. I didn’t even have a desire to wear any, because I couldn’t fathom another pair could ever replace the ones that I had loved. And sometimes when I saw a pair of earrings, I grew a bit apprehensive about thinking about purchasing and putting another pair of earrings in my ears after what I had been through. How did I know it wasn’t going to happen again? Better safe than sorry, I thought; no thanks. It was almost like the trauma had created an aversion to earrings. So I went without earrings for a very long time.

I had once been someone who wore earrings all the time; I was seldom seen without them. Now I was never seen with earrings at all; most people didn’t even realize my ears were pierced because they’d never seen me wear any earrings. Something that had once been a fundamental part of my appearance was now gone - all because of all the times that I had willingly chosen my love for those earrings over my love for my own well-being.

Something interesting happened, though. Several years ago when I was dating the person who is now my husband, he purchased a pair of earrings for me for my birthday as one of my gifts. I had not mentioned anything to him about jewelry; frankly, I’d been hoping for some new books. He had noticed that I didn’t wear nor seem to own any jewelry and decided on his own to surprise me with some. Given that at this time he was a non-traditional college student working in retail, he wasn’t particularly wealthy, so this purchase probably swallowed up a substantial amount of his meager paycheck; it was a very sacrificial and meaningful gesture.

And the way he gave it to me was very thoughtful and romantic; he had created a book of poetry that included various pictures of me as well as scenes of nature as the book’s illustrations, and he had the book typed up and professionally bound like an actual book. Then he removed the earrings from their case, taped them to one of the pages in the first few chapters of the book, and gave the book to me as a gift along with some flowers. I had been pleased with the book and didn’t even notice the earrings until I was flipping through the book the next day. (Such a sweet, creative surprise.)

When I found the earrings, I removed them carefully from the book, held them in my hands, and looked them over. They were beautiful. They were very different than my previous earrings. They were actually different than the type of jewelry I would typically select for myself. But I still liked them. They were gold earrings that had tiny diamonds and amethyst stones (amethyst is my birthstone). They were medium sized. And they were 18 karat gold - nickel free.

They were earrings that I could wear without injury.

I hadn’t even told him (my then-boyfriend, now-husband) about my nickel allergy. The topic had never come up. So it wasn’t like he picked the 18 karat gold jewelry because he had advance knowledge that I needed nickel free jewelry. He just happened to choose it on his own - even though some other type of jewelry would have been a much more affordable purchase for someone whose salary was as low as his was at that time.

Mind = blown.

I was at home alone when I found the earrings. I put them in my ears slowly, carefully, one at a time. I sat still for a few minutes because it felt odd to have a pair of earrings in my ears that wasn’t the pair that I had loved for so long. It didn’t feel bad, but it felt foreign. Strange. Unfamiliar. I didn’t know how to take it and I almost reached up to take them out. Then I stopped myself and decided to walk over to a mirror and take a look at myself wearing them.

I gazed at myself in the mirror, paying especially close attention to the earrings. They weren’t ugly. In fact, they were quite lovely. But I’ll admit that they didn’t “do anything” for me. They didn’t sing out when I looked at them. They didn’t cause me to break into a silly, girlish smile and spin around like when I first put on my previous earrings. I didn’t feel the need to twirl them in my hands and smooth my fingers over and over them, and I didn’t feel instantly transformed when I put them on. They were nice earrings and all...but that’s all they were. They were just earrings. There was no magic. No spark.

I walked away, deep in thought. And then I got tied up with a phone call, and then some errands, and then I had to respond to a few emails, and then I realized I hadn’t eaten yet and stopped to make a meal. Though I was busy, throughout all of these tasks there were still a few free moments or two here and there where I had time to think, and when I did, I pondered the difference. I thought of the difference between the two pairs of earrings and how sad it was that this new pair, despite being more costly and fancier, didn’t give me the same “spark” as my old pair. I didn’t really see the point of wearing a pair of earrings if they didn’t create that same exhilarating feeling within me. It seemed like a poor imitation to me, and what was the point?

As I thought this to myself, I shook my head. And when I did, I felt something. The new earrings. They were still in my ears! I had gotten preoccupied with the day and hadn’t realized that I’d never taken them off. I had been wearing them all of this time and hadn’t even noticed. Hadn’t even noticed...because they hadn’t caused me any pain.

I sat in stunned silence as I pondered the profundity of that thought. There was never a time that I wasn’t aware that I was wearing earrings when I wore my previous pair. I always felt them. Their weight, the itchiness, the swelling...I always knew they were there. Was always conscious of their presence, of the discomfort, but I tolerated it because I felt the rewards of wearing them far outweighed the pain that they caused me. But this was a different experience for me, these new earrings. For me to be wearing earrings and be so NOT in pain...so at ease...in so much comfort that I literally did not even recall that they were there...I had never known what that felt like. It was astonishing.

I sat and thought some more, realizing the error in my former way of thinking. Here I was about to reject the new earrings because they didn’t cause me to swoon, completely disregarding the fact that they possessed other admirable characteristics. They were high quality; they were beautiful; they were chosen and given with love; they contained precious gemstones; they were new and different...but most importantly, they didn’t hurt me.

With my previous earrings I had to accept that they came with pain and that they would always cause me pain. It was part of the package. Yes, they brought me tremendous joy, but they simultaneously brought me massive pain, pain that never went away and actually increased over time. But these new earrings...with them I didn’t have to tolerate pain in order to enjoy their presence. I could simply put them on and enjoy their presence - pain free. I could just be me...just go about my day, and they were a quiet, non-intrusive complement to the rest of me.

No, they didn’t cause my heart to sing and cause me to feel all giddy inside like my other pair, but maybe that wasn’t supposed to be their purpose in the first place. Earrings are an accessory item. They are supposed to accentuate, to highlight, to add to an already complete ensemble. They aren’t a necessity, but they sure are nice to have. Maybe the reason they didn’t affect me in the same way is because when I put these new earrings on, I was already complete whereas when I put on the previous ones, I was looking for them to complete things for me, to be the “final touch.” And that isn’t what earrings are made for.

Those former earrings aren’t bad. I didn’t throw them in the trash or anything when I discarded them. They weren't - aren't - trash. They will make a stunning pair of earrings for whomever their next owner shall be. There is nothing inherently wrong with those earrings; they’re just totally, absolutely, unequivocally wrong for ME. They’re just bad for ME. But for someone else - some person who can easily tolerate nickel - maybe those same earrings will be a huge blessing.

And I’m not bad either, and I refused to be convinced that I am. I’m not less than, or defective, or flawed because I happen to have a nickel allergy. That’s just who I am. I’m not going to feel sad, guilty, or remorseful about that. I can’t have nickel in my life because nickel hurts me. That’s just the way it is, and I shouldn’t be shamed for that. I want to be whole; I want to be healthy. And for that, I personally need real gold, real silver, real platinum, etc. That’s what works for me. That doesn’t mean I think nickel is beneath me or that people who can wear costume jewelry aren’t equal to me. It means none of that. I simply require something else for me to be at my best.

You can love something. That love can be absolutely, positively, 100% authentic. It doesn’t make it fake; it doesn’t make it a lie; it doesn’t make it a game. But if it hurts, it DOES make it unhealthy for you. You see, love is not enough. You need more than just love to survive. If that thing that you love causes you pain, than that love is not for you. Let it go and be open to the real, lasting love that is meant for you. The one that will not hurt you but will fit seamlessly and effortlessly into your life; the one that will complement who you are and will cause you to glow in a way that only reassuring, stable, and healthy love can do.




Image is white text on a black background that states: "Love is not enough." Photo credit: HR Examiner