Not Broken, Just Trying to Find Our Balance

Many of us have heard of tokenism. According to the Oxford Languages dictionary, tokenism is: “the practice of making only a perfunctory or symbolic effort to do a particular thing, especially by recruiting a small number of people from underrepresented groups in order to give the appearance of…equality within a workforce.”

In other words, tokenism is using people with certain life experiences (often one from which they cannot escape) for the sake of saying they hired or are utilizing individuals with said experience. This can even happen for those with a fetal alcohol spectrum disorder (FASD).

Raise your hand if this has happened to you!

We might be paraded as the “Face of FASD”, but then quickly told to sit down and fall back to the background.

If you are a minority of any sort, you can likely relate. For many people, tokenism can make those who practice it feel good as if they have done their duty. Unfortunately, for those of us on the receiving end of tokenism, it feels like nothing more than mere lip service. It can even feel patronizing.

Never mind that we are more than FASD. Never mind that our lives and stories should be more than gimmicks or ways to earn sympathy points. Don’t get me wrong! We want to be at the table. We WANT–no, NEED–to share our experiences. And I’m not talking about sharing our experiences for attention or sharing our experiences because it is therapeutic.

Our perspective is needed. Without it, how can things truly change?

We don’t need organizations or groups or researchers or whoever to keep going about things the way they have been done, the way they see fit simply because they are the “experts”.

Experts are needed, and letters behind the names are needed. Individuals with the living experience, however, are saying that experts, unfortunately, often fail to listen–truly listen–to those who have lived this life longer than they have studied it from the outside. If anyone is an expert in FASD, it’s those who live it every. single. day.

Again, we need those extra letters. Heck, I am one of those individuals with extra letters behind my name. I am not discounting those. I also believe that many of them mean the absolute best but may not understand their half invitation may be doing more harm than good.

You see, there is a phrase the International Adult Leadership Collaborative of the FASD Changemakers is known for: Nothing about us without us!

This phrase speaks to the heart of inclusivity – a heartfelt and full welcome to the table.

Put another way, don’t just talk about us or to us, but speak with us.

I like to say:

Seeing humans with FASD as less-than is like calling an orchid among roses unworthy to be in the garden. Both are beautiful; it is just that one was unexpected.

The flower doesn’t need to change—it’s our expectations of what belongs in the garden that do.

You know, I don’t think most people intentionally set out to see people as less than or not as capable, but, due in part to decades of societal stigma, have implicit, underwritten attitudes that affect the way in which they interact with people.

Maybe they don’t explicitly view the orchid as less-than, but because of their expectations of a garden, they implicity treat them as such.

And that is what self-advocates speak out against!

Our ideas, or expertise, our living experience, individual skill sets, our humor, our resiliency, our unique perspective all add incredible value. We, as people, disability or not, add incredible value.

Stigma is an interesting phenomenon. It’s not just a buzzword, but something many individuals experience. It’s not just the stigma they receive from society or systems, but then this becomes internalized and affects the way in which that individual continues to interact with that society or within systems. They see themselves as less than, as unworthy of inclusion, and, in turn, become afraid to speak up and seek out resources.

Women become afraid to ask for help if they were/are drinking during pregnancy. They become fearful of losing their children. Or afraid admitting to drinking will finalize what society has deemed a negative diagnosis with an entirely negative prognosis. They are afraid of being labeled “those moms”.

Individuals become afraid of seeking out a diagnosis, worried they will be labeled bad or unable. Those with a diagnosis are afraid of it being used against them or misunderstood. And due to the language that was ever pervasive (100% preventable) they are now seen as the case that was preventable–the person that is broken and needs fixing.

Roozen et al., 2022

Something that we want society to consider is this interesting tightrope we have to walk, so walk it with me for a moment:

Imagine yourself walking along a tightrope trying to maintain your balance, knowing that even the slightest wrong move could send you falling to the ground below.

This sort of balancing act is what it is like to live with FASD and to try to decide when, where, and how (or IF) to mention your diagnosis.

The conflicting messages we receive in the workforce:

“You should tell us you have a disability so that you are protected by the ADA.”

But then when we need accommodations or understanding because of something that comes along with our disability:

“You’re an adult! Stop using your diagnosis as a crutch!”

We don’t know if we should tell our employees if we have a diagnosis because we are afraid we won’t be hired or it will be held against us. But we are also afraid that if we don’t tell them, we will never truly be understood or given proper accommodations or simply, grace. And like the example above shows, we can even be afraid that even if we do tell, the employer will trivialize our diagnosis and crush our self-advocacy

The conflicting messages we receive in the educational systems:

“All students and learning styles are welcome. We understand and take disabilities seriously.”

But when parents tell the teachers their child has FASD, they are told

“Well, your child seemed to get it last week. This is mainly a behavioral issue. Maybe they should try harder or be a little more disciplined.”

When an older student tells their teacher they have an FASD, they are told

“You don’t look like you have FASD. Isn’t this something you had as a child? I don’t think you need accommodations. If you think you do, maybe you would be better off in special education classes.”

Parents walk this balancing act of whether or not to tell the teacher because often the teacher does not understand that the child does NOT need to try harder. A student is afraid of telling the teacher because they do not want to be seen as “dumb” or “unintelligent”, and is afraid of being wrongfully labeled, even if it means they will not receive accommodation.

The conflicting messages we receive from the church:

“We welcome all people of all walks! Welcome to the family!”

But when we tell leaders or other church members a child has FASD, some may say,

“Have you prayed about that? What happened as a baby shouldn’t affect them that much now, right? If you just pray more, maybe they won’t behave that way.”

People don’t know when or if to tell those in church they or someone they know has an FASD because, on the one hand, they want to be seen, heard, and understood, but on the other, they know the wide range of mislabeling and misunderstanding that comes with telling people they have an FASD and how this can make them feel less seen, less heard, and less understood. The balancing act of acknowledging both the very REAL and lifelong effects of alcohol on both brain and body and the power of faith is a struggle that many affected by FASD don’t know how to communicate to the church.

The conflicting messages we receive from the disability community:

“We value those with an FASD and we want to represent them well! There is no one that understands disability like us! So glad to have someone with an FASD here to support this project!”

But when those with a disability speak up bringing their expertise to the table, they hear,

“That’s great. It’s nice you’re here, but we would prefer it if you let us do the talking, planning, executing, etc.”

This messaging makes it challenging for us to want to get involved in projects or organizations that say they are for FASD. We are afraid we will, as stated above, be used for nothing more than just the Face of FASD.

This balancing act carries over into friends and family and all other areas of life.

If we say this here, will we fall? But if we don’t speak up there, will we fall? What if I just casually mention it just in case they need to know? But maybe I only say that after I am hired or brought on board so that they won’t find an excuse not to hire me. Maybe I only tell my professor my diagnosis after they learn how good of a student I am so they don’t treat me like I’m different. I want to connect with my friends, so maybe I should tell them my diagnosis, but if I do, they might think I am weird.

And don’t get me started on the medical professionals. I want to tell them so they are aware of what physical conditions may arise, but then I immediately see their faces when I do bring it up. I have heard, “You don’t look like you have FAS?” “I hear what you’re saying, but FASD does not affect the heart!” And if they do accept I have an FASD diagnosis, there is the thought in the back of my head that then they might not trust my judgment or respect my sense of autonomy moving forward. Moreover, the overwhelming lack of understanding in the medical field makes us hesitant to share as we are often brushed off like lent on a jacket.

Why do I share all of this?

You may be thinking to yourself, this seems a little less positive than previous blog posts.

I would be doing the concept of self-advocacy a disservice if I did not discuss reality, but with that said, there is something positive that can happen when we first acknowledge the reality of so many!

We can begin to address them in a life-giving way.

We can learn more about ourselves, our motives, and our implicit attitudes.

I don’t know about you, but I love a good challenge. I love the opportunity to grow.

But maybe what I want more than the above is for others to say, “I am not alone! I am not crazy! I, too, have felt this way.”

I want others to read these words and tell themselves that they do not have to unnecessarily carry these negative internalized messages. We are not broken! We do not need fixing. We deserve a seat at the table. And give yourself (and others) grace for the moments we are trying to find our balance.

The more we raise our voices, the more we will see a world that won’t see us as broken and fewer and fewer systems will make us walk a tightrope. And whether you’re an individual with FASD or someone who loves someone with FASD, just know that I see you. You, to many, are the orchid that belongs in the garden–afterall you, just the way you are, make it more beautiful.

References

Roozen, S., Stutterheim, S. E., Bos, A. E. R., Kok, G., & Curfs, L. M. G. (2022). Understanding the social stigma of fetal alcohol spectrum disorders: From theory to interventions. Foundations of Science, 27(2), 753–771. https://doi.org/10.1007/s10699-020-09676-y