Women Are Speaking Endo: but who’s actually listening?

DB444585-499B-464E-B23B-E38D314481E0.png

 

Senator Warren, first and foremost— THANK YOU! I cannot even begin to tell you how much this tweet means to me. I am a disability advocate and expert, who is now 30 but at age 21 was diagnosed with Endometriosis and other co-occurring chronic illnesses.  However, I started exhibiting symptoms years earlier.

Here’s the landscape of endo care in America. Endometriosis is more painful than child birth, and yet EVERY SINGLE WOMAN diagnosed has been told multiple times it’s all in their heads. It takes years to find an actually qualified surgeon, and the treatment options are archaic. Female diseases are stigmatized at such a higher rate than diseases that primarily affect men because women who report symptoms are seen as people who are exaggerating, irrational, and emotional instead of reasonable individuals showing clear evidence of disease. Delays in diagnosis caused serious damage to my internal organs and body systems. It’s not painful periods. It’s pain allll month long. It’s nausea every day of my life. It’s the detrimental cells that form and in time create damage and scar tissue that binds my internal body parts together and simple physical movements cause them to tear apart and create more damage. It’s the children I may not be able to conceive because endo is the leading cause of infertility. It’s wasting many days, nights, and money in traveling to specialists for surgery and checkups and paying thousands of dollars for treatment of symptoms because researchers don’t care to find a cure.

You may have lately seen commercials saying #SpeakENDO or that encourage speaking up about endo. They show women at the doctor and they are hesitant to share just how awful their symptoms are. The doctor is asking, “how has your pain been?” and the woman is down-playing it. This commercial INFURIATES me. Women ARE telling their doctors of their symptoms, over and over and over again. Doctors are the ones who aren’t listening. Doctors are the ones down-playing it, saying it’s all in our heads. Doctors aren’t asking us those questions. And as we get sicker and sicker they act like we’re getting crazier and crazier. Doctors are spewing myths about how a hysterectomy or getting pregnant will cure endo when there is no cure. Doctors are saying that because an ultrasound or a CT scan doesn’t show anything, endo isn’t present—when endo can ONLY be diagnosed through a surgical laparoscopy.

The truth is that women ARE speaking up. I’d love to see a campaign or commercial that shows just how women are really treated when they speak up. They are more than ignored—they are treated like drug-seeking scum. This is what endo is.

I’m eternally grateful that someone in politics is showing care and compassion, and I pray this commitment to finding real options and de-stigmatizing endo continues past this tweet. As a future attorney (I finish law school in less than a month 💛) I would love to see women with chronic illness receive the proper care and legal attention required when this disease becomes debilitating, tough preferably before that. I’d love to see reform in the medical field as to how this disease and other diseases are taught. I’d love to see policy changes and licensing consequences that are correlated to the mistreatment of female patients. I commit myself to making a positive change and being an unwavering advocate. Senator Warren, I hope you do too. Thank you for your tweet. Thank you for bringing awareness. The endo community is grateful.

Thanks to @drsalliept for bringing this tweet to my attention and as always, thanks to @endowhat for being a persistent agent of change in the endo world 💛

Law Students with Disabilities: disability and character and fitness

Law Students with Disabilities: disability and character and fitness

People with disabilities have proven over the years that they can achieve great academic and vocational success.  With the rapid increase in disability diagnoses, and the extension of academic resources and accommodations, students with disabilities are able to demonstrate their vast knowledge and abilities.  As such, our world is filled with high-achieving professionals with disabilities.

Unfortunately, professional systems haven’t caught up with the times.  Law students with disabilities face more discrimination than most professionals, because part of becoming a lawyer is passing the bar exam, and part of that process is passing the character and fitness portion.  Law students are forced to disclose disabilities (mental and physical) and at times medical records, to prove to strangers on the character and fitness evaluation team that they are of good moral character to represent others.  By requiring this information, the Bar is assuming that disability is a negative thing–something that students must attest to while proving that “despite their disabilities they can be great lawyers.”

But why does the Bar take that approach?  You see, if any person would be a great lawyer, of good character, it would be a person with a disability.  People with disabilities face challenges on a daily basis.  They are forced for long periods of their lives to adapt to hurdles thrown their way, and compensate for their differences.  They understand the ups and downs their clients face–because they have thrived in the face of stigma and discrimination–and they have succeeded in achieving their goals.  They have become accustomed to the unpredictability and are quick to problem solve.  People with disabilities are persistent and resilient by nature, and have worked incredibly hard to be respected in schools and the workplace.

But the issue of passing the character and fitness evaluation is terrifying law students with disabilities everywhere.  Because the thing is, you pay hundreds of thousands of dollars by the time you have finished your legal education, you work hard to ace your exams, you walk across that stage at graduation, and then months later, the state bar decides if you are of good character despite your disability.  This is on its face, discriminatory.

A law student at my law school (though at a different campus) is taking a monumental step in suing the Florida Bar based on its issues with his mental disability.  This is a veteran, who served our country by working with explosives, who our country deemed was of good enough character to defend our freedom.  Yes, like many veterans he came back from a deployment with a mental illness.  He dealt with life or death situations while deployed and it’s reasonable that someone in that vocation would return with mental illness.  Complicating matters further, he was going through a divorce–known as one of the most mentally straining processes for anyone.   Also like many veterans and others dealing with especially stressful and personal life issues, he coped for a period of time by drinking too much.

This student did the right thing by asking for and receiving help when he needed it.  He received treatment for adjustment disorder and substance use disorder from the VA medical center.  He has been actively going to therapy and maintaining his mental and physical health consistently for a long period of time.

So, in return for asking for help and consistently treating his understandable mental health concerns, when this veteran tried to find a different career serving this country in an alternative way (serving citizens with legal needs), the Florida bar creates a fury of discrimination armed with stigmatic attitudes.  They want him to pay thousands of dollars to provide even more medical documentation than he already submitted, and have him

This is an issue that needs to be resolved, and quick.  Because the ADA and other related laws dictate that people cannot be discriminated against because of their disability.  Disability is a protected class, a class of people who have been historically and systematically discriminated against.  For that reason, to right the historical wrongs, the ADA and IDEA and the Rehab Act all were created to dismantle this wrongful discrimination.  Yet, the ABA and state bar’s haven’t followed suit.

They have, however, tried to shield themselves from an ADA violation by “encouraging” state licensing boards to focus on the behavior of the law student instead of their diagnosis specifically.  However, it is frequent that behaviors can be explained by a specific diagnosis.  Without explaining the diagnosis, behaviors can seem confusing to a licensing board.  Notably, these licensing boards have infrequent experience with people with disabilities.

Law students with disabilities not only have to prove and substantiate their diagnoses to their law schools to receive reasonable accommodations, they have to do the same for the MPRE, the bar exam, and the character and fitness evaluation.  In this sense, they have the cards stacked against them.  They remove card by card, proving their character and persistence again and again, in hopes that when they graduate they have a seat at the table.  But often, the people who evaluate students with disabilities are hired to evaluate them against their peers without disabilities.  They say, “clearly if this student got As in law school, they don’t need accommodations on the MPRE/bar exam because even though this student received appropriate accommodations in law school, compared to the average Joe they still would’ve passed.”  The purpose of accommodations is not to pass or beat the average Joe.  The purpose of accommodations is that the student can showcase their knowledge in a way that others without disabilities can see. 

In this way, students with disabilities are being academically handcuffed by the very institutions that could benefit from their being accepted.  Lawyers with disabilities have the unique capability of empathizing with clients, lawyers, judges, etc. They have had to advocate for themselves and their peers repeatedly throughout their lives, and as lawyers advocate and are active participants in legal organizations.

People with disabilities live life differently–they don’t live life incorrectly.  For the state bar, the ABA, the MPRE evaluation committee, and law schools to assume that based on past challenges that were addressed by correct treatment, an individual is not of good character is discriminatory on its face.

Disability is one part of a person, it is not the whole person.  To not allow a student with a disability to become a lawyer after he addressed and treated his disability is just plain wrong.  Who can better serve clients going through hell, than a lawyer who went through hell and came out on the other side?

If the people evaluating individuals with disabilities for the character and fitness see a disability (mental or physical) as guilty of bad character, and make the student prove otherwise, the evaluators are not go good character themselves.

We need to encourage, accept, and support law students with disabilities.  However, to historical legal systems apparently that is too much to ask.  So at a minimum–just don’t discriminate.

Additionally, this level of discrimination discourages treatment.  If you seek help for mental illness, you could be denied your dream career–so you don’t get help.  Lawyers are known for heavy drinking and substance abuse.   It’s a massive problem in the profession, so much so that law schools are talking with law students about it at their orientations. In fact, if many lawyers practicing in the field for years had to be once again evaluated for their character and fitness, they would fail.  In this sense, the ABA and the state bar are not encouraging present or prospective attorneys to seek treatment out of fear of losing a career they worked so hard to obtain.  They are also denying respect and fair treatment to students with disabilities, most of which are young and haven’t had decades to prove their stability, but have this used against them that they haven’t been managing their condition long enough for the bar to determine them to be of “good character despite their disabilities.”

It’s time for change in the legal profession, despite the system kicking and screaming in an outdated protest.

 

 

 

To read more about the case referenced above and the ABA recommendations:

http://www.abajournal.com/news/article/ada_lawsuit_about_florida_bar_examiners_mental_health_requirements/?utm_source=maestro&utm_medium=email&utm_campaign=weekly_email

http://www.abajournal.com/news/article/house_urges_bar_licensing_groups_to_tread_carefully_when_asking_about_menta

 

Autism Awareness Month: Tips for Sharing while Caring :)

 

Happy Autism Awareness Month! 

Every year around this time I get the joy of seeing many of my friends and family sharing their enthusiasm and interest in disability advocacy and it warms my heart and makes it grow at least 10 times.  With that said, there are some things I want people to keep in mind when they want to share their support for those on the autism spectrum.

 

  1. Keep in mind person-first language. Someone is a boy/girl with a disability, or a boy/girl with autism, or a boy/girl who is on the autism spectrum.  It is not okay to refer to someone as “autistic” unless they say it is okay to do so.  The reason behind this: a person is not his label.  He is a person, first.
  2. Be aware of the organizations you are promoting, and their main messages. There are many organizations who have done wonders in increasing awareness about autism but some of the most well-known autism organizations do not sit well with people who actually have autism.  The reason behind this: there are major organizations that have an autism focus, that focus on researching to find a cure for autism.  To my students, clients, friends, and family on the spectrum this comes across like an insult.  One of my prior counseling clients put it best when he said, “saying I need a cure is saying there is something wrong with me.  I’m not like everyone else, but just because I’m different doesn’t mean being me is wrong.”
  3. Showing your support on-line and through social media is awesome. Including people with autism in your day-to-day life is even better.  Take steps to make your clubs, businesses, organizations, parties, and events inclusive to people with disabilities.  If you need help with this, shoot me an email!
  4. Keep an open mind. People present any difference or disability in a unique way.  For some, you might be very surprised to learn they have a disability.  For others, their disability may be more apparent.  It doesn’t mean they deserve more/less support or more/less understanding.  Autism (like most differences and disabilities) operates on a spectrum and is unique to the individual.  There is no right or wrong way to present your differences, but there are ways to help someone with a disability to acclimate to a new job, school, or social group.  There are also simple ways to show patience throughout your daily life with strangers because as the old saying goes: “you never know what someone may be going through.”
  5. Children with disabilities grow up to become adults with disabilities.  There are so many wonderful resources for people with autism and other disabilities, and I encourage you to look into great programs for adults who are on the autism spectrum.  In Michigan I have worked with the BOND Program at Michigan State University, ASPPIRE, and other amazing transition and vocational programs for adults who have autism.  There is such a need for more support of these programs.  People with autism can be capable, hard-working individuals that light up their communities and make contributions socially and vocationally.  Show your support for continued growth and opportunity by contributing to these programs!

With all that said, I am eternally grateful for the disability awareness taking place this month and as always commit to spreading awareness year round. Light it up blue!

 

Thanks for caring and sharing 😊

Ashley Jacobson, MA, CRC

legallyabled@gmail.com

Victims with Disabilities (Part 2): The FACTS and Numbers

Victims with Disabilities (Part 2): The FACTS and Numbers

I previously posted a podcast about victims with disabilities, after having provided a training to the Ingham County Prosecutor’s Office on how to best approach a case involving a victim with a disability.  This is part 2 of the Victims with Disabilities series of the Legally Abled Podcast, where I provide the actual statistics on victims with disabilities in the U.S.   If you are a person with a disability or you know and care for a person with a disability, it is important that you know what the current state of victimization is involving people with disabilities.  Once you know how prevalent this problem is, you can start to understand how important it is to arm yourself with legal and practical  knowledge as to how you can best protect yourself if you are ever faced with this situation.

If you have any questions regarding people with disabilities, or are interested in having me provide a training on navigating life and the law with disabilities please feel free to reach out at legallyabled@gmail.com.

Please listen, subscribe, and review this podcast on the Apple Podcast app (which is pre-downloaded on Apple phones–it’s a purple App icon labeled “Podcasts”)!  For those without iPhones have a listen at the end of this post! I also am very open to answering questions on the air if you are interested in sending me questions to discuss on the podcast!

Thank you for your continued interest and feel free to pass along.

Ashley Jacobson, MA, CRC

legallyabled@gmail.com

Accommodations and Common Misconceptions

Let’s talk about accommodations.  First, let’s clear up what they are.  Accommodations are the steps taken, methods utilized, and resources provided or used that level the playing field for people with disabilities.  They enable people with disabilities to achieve their highest potential.  Once in place, they are mandated by law.  Schools are required to provide reasonable accommodations to students with disabilities and in general, schools and workplaces are required to not discriminate against students and workers with disabilities.

Next, let’s talk about what they aren’t.  They are NOT “special treatment” (and if I have to hear one more professor or student refer to them as such…let’s just say it won’t be pretty).  People with disabilities are not given an advantage over others without disabilities by using accommodations.  Let that sink in.  People with disabilities use accommodations to show you their abilities, not to give them some magical new ability to one-up a person without a disability.

So, what is an example of an accommodation?  For example, for people with a physical disability like hand tremors, or a learning disability that affects their ability to write might require the use of a computer with speech-to-text software so you can read what they know and want to convey.  The use of the speech-to-text software doesn’t give their brain answers for the test, or info for that big project at work, it simply enables them to express themselves.   When they aren’t given this accommodation, they aren’t able to write, and can’t convey to their teacher the knowledge they have worked hard to acquire and would likely receive poor scores on exams.  But with the accommodation they have the ability to potentially be an “A” student, because they can actually tell you what they know.  People without disabilities are allowed to hand-write their exams to express what they know, why can’t people who use other modes of communication out of necessity, use those methods to show their understanding of the material?  Using an accommodation simply allows people with disabilities to display their abilities in a way that the inaccessible world can read/hear/see.

What is especially hard for people without disabilities to understand is when someone has an invisible disability–or a disability that is not easily apparent to people.  This could include a brain injury, learning disability, chronic illness or health condition, or a number of other disabilities.  In these situations, there are several accommodations that can be utilized–too many to put in this blog post–but know that these accommodations have been studied, practiced, and deemed appropriate by many before you.  If someone needs additional time on an exam, it isn’t because they get more time.  To them, that time isn’t the time they are working on their answers necessarily.  It is the time their brain needs to process the information, or to process language.  It is the time that they spend redirecting themselves back to the test after losing attention because of ADHD.  It is the time they spend trying to find the right word in their brain because their TBI makes it harder to find.

In my career I’ve worked with people with disabilities in the education setting at almost all stages.  First-hand I’ve seen students not receive or be deterred from seeking accommodations.  This is not because the accommodations were not appropriate, but rather because the school lacked the motivation to add one more thing to their list of responsibilities in their already under-funded and under-supported classrooms.

But the truth of the matter is that students with disabilities are some of the best but underutilized resources to our communities.  They are intelligent, capable, committed, and creative.  If we allow ourselves to have access to what people with disabilities know, through accommodations and otherwise, we can advance as a society and community.  We can better measure their skills and gifts, and encourage students to engage in paths that lead to new discoveries.  Without a simple (and usually inexpensive) accommodation, we could miss out on the cure to cancer, or the rocket-ship that takes us to Mars.  And it all starts in childhood.

When we don’t provide reasonable accommodations to students, we discourage them from learning at a young age.  We tell students that they failed, when in reality we didn’t know how to access their brilliance.  I can’t tell you how many adults with disabilities I have worked with who had low expectations for themselves, when it was inappropriate for their abilities to achieve higher potentials.  They say and think each year for the 12 years of education in this country that they are “stupid” when in reality they aren’t.  We train students with disabilities to be under-achievers, when they could contribute in ways we never imagined.

I personally know several special education and general education teachers who hold their students to their highest potential and have no problem identifying and encouraging students to use reasonable accommodations.  This post is not about those teachers.  This post is about the hundreds of teachers (usually general education teachers but also several *burned-out* special ed teachers) and administrators who want to put all students with disabilities in a box labeling them as burdens throughout their educational career.

I’ll dive into disability in higher-ed in another post, because that is a whole other beast, but it is even more of an issue in colleges and universities, mostly because they are just now encountering high-achieving (diagnosed) students with disabilities and are catching up to their growth after the fact.  I had the privilege of working for Michigan State University’s Resource Center for Persons with Disabilities, where I believe they have the model of what any disability resource office at a university should look like.  I also ran a program for students with autism who attended the university and will dive deep into the resources provided at the post-secondary school level (and what is mandated and legally required at that level).

All in all, accommodations are advancing with technology and we need to encourage their use instead of treating those who need accommodations as lesser-than or questionable people trying to receive short-cuts or special treatment.  When we allow the use of accommodations, and stop deterring students with disabilities from contributing to their classrooms, we will see an improvement in students’ demeanor and emotional health.  We will see students with disabilities maintain gainful employment and be able to better support their families.  We will see leaders with disabilities enacting change in their local, state and federal governments for the betterment of society.

 

“I Can and I Will:” accessibility on Fixer Upper

 

pexels-photo-271667.jpeg

For a family that consists of a person with a disability, accessible housing is often at the forefront of their minds but unattainable until their wallets catch up with their needs.  In a world that is still largely built for the typically able-bodied, it is challenging to find a house that is accessible.  When you can’t move freely around your home, can it really feel like a home?

A couple of weeks ago on the television show Fixer Upper, Chip and Joanna Gaines worked with the Tim Tebow Foundation to renovate a house for the Copp family.  The Copps have two young boys, Calan and Lawson, who use wheelchairs for mobility.  After Tim Tebow meets with Chip, the show catches steam with Chip, Joanna and Tim meeting the Copps at a baseball diamond.  I loved how the boys were shown playing baseball and being active.  So often when shows involve people with disabilities and it has a charity angle, they tend to make the people with disabilities look needy to garner sympathy for the people with disabilities and pride for the charity.  It was nice showing how empowered and able the boys are, as it showed them doing a typical but cherished childhood activity.  It also shows how with the right accessible technology and equipment, people with disabilities can do the same activities as the temporarily able-bodied.

As the episode goes on, Joanna shows the parents the mock-up of the renovations they want to complete for the house.  Some accessible aspects of the home: ADA accessible bathrooms with lowered sinks and mirrors that tilt so they can provide a lower angle for the sons who sit lower to the ground in their wheelchairs; a separate lower sink in the kitchen; a table that allows users of wheelchairs to pull right up to it height-wise; hallways wide enough to have wheelchairs pass through without it being too tight; ramps to get in and out of the house; posts and handrails that allow the boys to stand, move and play; and wheelchair-accessible van storage space.  The show also highlights an inspirational message in one of the rooms to encourage the boys to continue to grow (*hint* it’s in the title of this article).

This show really exposed the needs of a family that includes people who use wheelchairs.  I loved the overall feel of the show.  It was a feel-good episode for sure, but it had a very empowering angle.  Without giving away spoilers, the show ends with the boys receiving a remarkable backyard that allows them to use their space to their maximum ability and desire.  The show brings about an important issue though—a family that has a person with a disability has an unending amount of expenses.  Too often, people with disabilities are forced to “make it work” in an environment they were living in prior to acquiring a disability—even if that environment is unsuitable or completely unworkable.  A father who uses a wheelchair shouldn’t have to eat in the living room because the dining room table is too short/tall for his wheelchair to fit.  A person with a disability shouldn’t have to be carried around their own house when they have the independence through the use of assistive technology to move around on their own.  While the Tim Tebow Foundation did a wonderful thing in funding this renovation for the Copp family, the vast majority of families that have a person with a disability in them are forced to pay large amounts of money with or without insurance, even with assistance from government or other financial-assistance programs.

This is why accessible buildings, homes, and other structures must become the norm as opposed to the exception.  We must continue to advocate for accessibility, and for reasonable pricing for making a home, car, or other device/structure accessible.  Being able to navigate this world with a disability should not be considered a luxury—it is a right.  I for one am grateful for shows like Fixer Upper for showing this angle of living with a disability.

Thank you,

Ashley Jacobson, MA, CRC

legallyabled@gmail.com

For details on the show’s episode mentioned above, click below:

A detailed review of the Copp family’s episode

 

 

Person-first language (and the “R word”)

In a culture where there is a clear divide between those who just want to “stop being sooo politically correct” and those who want to make sure they are being respectful, it can be challenging to know what to say (and what not to say).  It becomes even more of a challenge when you are attempting to talk about a population of people or a person in particular, and you are not 100% sure on the right terminology to use.

So, hopefully this post will clear things up a bit when it comes to discussing a person with a disability and why this topic matters.

So first—why does what you say matter?  Language is one of the most significant indicators of emotion.  Language dictates how you process the thoughts, feelings and actions of another person in your brain.  Language is used in gathering your perception of others and your environment.

Language directly affects how you treat others, because it demonstrates how you think about them.

Historically, people with disabilities have been (wrongfully) perceived as weak, pitiful burdens in our society.  From the “handicapped” label first used to describe homeless veterans with (what we now know as) Post Traumatic Stress Disorder, who were sitting on the street with their “caps in hand” asking for money, to the middle-schoolers (and many adults) using the “R word” to make fun of their friends when they are acting stupid, our society has made it very clear that it was deemed socially acceptable to stigmatize people with physical and mental differences.

I have worked with the disability community for over a decade.  In seeing many challenges my clients faced involving the legal system, I decided to go to law school.  I am a law student, and I complete my studies this August.  In my current law school program, which I have loved, I have encountered professors, classmates and administrators who (knowing our school has students with disabilities in attendance) talk about people with disabilities like trash.  A professor in a class I greatly enjoy, in response to me saying I want to represent people with disabilities, said, “Oh, you want to represent the meek and pathetic.”  To which I did not hide my shocked expression as he quickly moved on to the next topic.

I have many professors who are socially conscious, and respectful towards students and other people with disabilities.  But, I also have heard professors refer to accommodations as “special treatment” and refer to people with mental illness as “crazies” while rotating their index finger in a circle next to their head.  These are accomplished, intelligent, highly-educated professionals.  Yet still, training on disability appropriateness and inclusion has not been emphasized in their studies.  These are attorneys and professors who represent and teach people with disabilities on a daily basis, even if they don’t know it.  They aren’t bad people.  They’re just misinformed and desensitized based on societal conditioning that people with disabilities aren’t worthy of respect.

This stops right here, right now.  It never was, and never will be acceptable.  This is not a recommendation, but a requirement.  This is a heads-up that what you say matters, and if you use offensive language you won’t be accepted, and it isn’t cool.

Over 52 million people in this country have been diagnosed with a disability—over 2 million people in Michigan (where I live).

Disability is part of the human experience.  It’s not grim, but it is the truth that at some point in your life you will have a disability.  If you haven’t yet, it could happen tomorrow or in 20 years.  But you cannot deny that at some point, as you age, you will face trauma and change, physical and emotional.  In living life, you are putting your body in a position where it wears down over time.  You will experience unpredictability in your life and you will have to learn to accept it, adapt to it, and thrive with it.

In that moment, when you are likely dealing with extreme physical and emotional changes, and grieving over abilities lost and limitations imposed, would you want to be insulted or would you want to be respected?  You wouldn’t want people to categorize you as a burden, or incapable, or unworthy—because you are not any of those things simply because of a physical or emotional disability.

You’d want to be seen as a person, first and above all else.

This is where the person-first language shift began.  The disability community and its advocates decided that someone needed to display how to appropriately talk to and about people with disabilities.

First, you call the person by his/her name.  If the disability is not relevant to the conversation, it is not necessary nor appropriate to attach it to your description of the person.

When disability is relevant to the conversation, use person-first language.  Instead of saying “disabled man” say “man with a disability.”  Instead of saying “schizophrenic” say “woman with schizophrenia.”  It takes practice to get in the habit of using the right phrasing, but it’s important.  You are literally and semantically putting the person first.  This emphasizes that person, their abilities, and their individuality over any disability that might follow.

Person-first language should be your foundation.  If the person with the disability prefers you to use other language or phrasing, always comply with what language they feel comfortable with, but NEVER use the “R word.”

Let’s talk about the “R word” for a minute.  The word “retarded” was part of a clinical diagnosis (mental retardation), that our society deemed an insult for someone they perceived as stupid, irrational, or ridiculous.  So, our society decided to use this part of the clinical diagnosis, not toward those with a diagnosed intellectual disability, but instead towards people without disabilities as a way to criticize or ostracize them.

Because our selfish, rude, and ignorant society twisted this clinical diagnosis into such a horrendous insult, the word lost its original meaning completely.  The word became a weapon instead of a condition.  A simple word began to carry so much hate and stigma in its delivery, that this large community of people with disabilities had to actually protest and advocate that medically and legally the word be removed.

To anyone out there who responds to a request to stop using that word by saying, “but technically I am right, because that’s what doctor’s use,” you’re wrong.  You’re also (likely) not a doctor.  It is not used in laws, textbooks, nor in practice.  You have a brave girl named Rosa to thank for that.  Rosa’s law was passed in 2010, and if you want to read the actual law that was passed, you can find it here. 

Rosa was a strong, smart, driven young girl who decided that she was tired of being made fun of, and tired of others using the “R word” to make fun of others.  With the support of many senators, representatives, and public advocacy campaigns, Rosa took this change in language into her own hands and asked the government to remove the “R word” from its laws.  Rosa was successful in achieving this goal, after “Rosa’s Law” was signed and approved by former President Barack Obama in 2010.  Additionally, after seeing the mess that was the movie Tropic Thunder, the “Spread the Word to End the Word” campaign spread the message that using the “R word” to make fun of someone in the media and socially is unacceptable.

Most importantly, if you are wondering other reasons as to why you should not use the “R word” besides it being technically incorrect, offensive, and ignorant, you just shouldn’t use it because people with disabilities don’t want you to.  It’s that simple.  Be a decent human being to other human beings.  You will someday be in their shoes, and you’ll want someone to show you empathy and respect when that happens.  But even if you are the rare exception that is not going to have a disability someday, it takes more energy to spread hateful language than it does to just be decent.

For these reasons, you also want to be really aware of how you perceive people with disabilities.  This is where it can get tricky for many people without disabilities, because you may not be using words that you find to be offensive, but you are inadvertently mislabeling or stereotyping a person with a disability.

You may mean well when you say someone is “inspiring” simply because they are living with a disability.  But when you say that someone is inspiring for doing things that a person typically does each day, it’s more than a little condescending.  We know, you are acknowledging that there may be more things a person with a disability has to do to achieve the same results you can in your day-to-day activities.  But when you say that someone is “inspiring” or “overcoming her disability” in doing typical daily functions, you are also sending the message that her life is so awful and unimaginable, that she must have to overcome her horrible circumstances.  Don’t be patronizing.  Be respectful.

What does it boil down to?  People with disabilities don’t want your pity or sympathy.  They want your respect and empathy.  When you say someone is “suffering with…” or “overcoming…” or “confined to/by…” you are invoking feelings of pity, your inclination is to feel sorry for that person.  It’s like saying, “his life is so awful, he is suffering/overcoming/confined by his disability.”

Instead, you can use (when the disability is relevant) “sustained a brain injury,” “diagnosed with…” or “living with (insert disability here).”  This language normalizes disability, instead of dramatizing it.  Disability may be part of that person’s life, but it’s not their whole life and it certainly is not who they are.  People with disabilities adapt to their differences, or even utilize their differences to become successful.

I appreciate those who have stuck with me here.  This is a good cheat sheet I use in many of my presentations:

person-first chart

Also, keep in mind that certain disability populations take pride in their label because they do not see it as a stereotyped label but instead use the term as a way of indicating a community of like-experienced individuals.  Person-first language should always be your starting-point—your foundation.  As I stated earlier, if the individual states he wants you to refer to him in another way, it’s okay to refer to that person using the term he has provided.  Always start back at these guidelines though with new people that you meet.

 

Thank you for caring and sharing.

 

Ashley Jacobson, MA, CRC

legallyabled@gmail.com