Self-determination is a tricky process for people with disabilities because it operates on a continuum. Life is unpredictable, and for the most part–so is disability. But, with self-determination, the person with a disability can regain some level of control and dictate the choices and direction of her life. Self-determination is a concept where a person has the confidence and ability to decide and move forward with the best, next-steps in his own life. Not what you or I think is best, but what they want for their own lives. For many, especially those with disabilities, well-meaning loved ones have in a lifetime of protecting the person with a disability (PWD), have actually kind of sheltered or unintentionally taken control over the life of the PWD.
It’s difficult for loved ones, and I understand that better than most. I have been guilty of being a helicopter constantly propelling what I thought was best over the person I love with a disability. It’s incredibly challenging to shut that off because you love that person and want what is best for them. I know it may seem like I’m asking a lot for you to back down (or if you are a PWD, to take control)…but please, hear me out.
When I was a special educator, and then a rehabilitation counselor (CRC), I saw many students and young adults with disabilities that had their differences in ability. They had skills that needed more developing, skills they were not capable of displaying, and skills that made them unique assets in the best way. However, those unique-asset skills were often under-utilized because they had not practiced them independently on their own incentive or triggering. For example, they could do really well in an interview after having practiced and trained, but they were going on job interviews below their skill level because someone (though again, well-meaning) told them this job would be “so good for you!” Or, they were not going to job interviews at all because their loved ones were really (and understandably) nervous about them putting themselves out there and taking a massive step towards independence.
The biggest limitation in the life of any person is their own belief that they are limited. Yes, of course individuals (with disability or temporarily able-bodied) have to be realistic. I’m not saying someone who has never dribbled a basketball, or someone who has played in a community basketball league–has the skill to try out for the NBA. But I am asking for you to not make assumptions about their abilities or limitations, because when you assume their limitations, they see themselves as inherently limited. Really sit down with the person, and ask him what he would like to learn. Ask him what skills are important for adults to possess. Objectively think of the many skills he has already learned, and try to compare those to the skills he wants to learn.
I am not suggesting that anyone just shut down and remove themselves out of the PWD’s life in one clean break, no longer helping the PWD with anything. It is a process, and of course you will never just be out of their lives–you love them! Nonetheless, self-determination is learned and blossoms in an environment that encourages growth, independence, and inclusion. This is one of the reasons why so many adults with disabilities phase out of the public education system, and wind up under-employed or unemployed. Further, when students learn skills at school relating to independence, they lose those skills if they are not generalized and practiced in the home-environment. And trust me, I completely understand that as a loved one of a PWD you are busy and have many, many responsibilities for yourself and your family. That’s why I want to give you some tools and strategies for encouraging the independence of the PWD so that maybe it can at the same time lessen your work load and empower your loved one.
It is difficult for many people without disabilities to break down the appropriate steps in fostering and empowering independence in a PWD. Every person is different, but here is an example of how one could foster the self-determination process in an adult with a disability (Also: You can reach out to someone who works in this field–like me!–if you want guidance on appropriate steps for a specific person…again, progress is a continuum with steps forward and steps back, and that is okay. This does not have to happen overnight!).
Self-determination skills: Determining food choices
- Watch a cooking show on tv that discusses nutrition and healthy eating
- Practice cooking simple meals in the kitchen with the PWD, emphasizing safety and nutrition (boiling water for pasta, making pasta, cleaning up after making pasta, with canned sauce)
- The PWD cooks on his own while the loved one is not overseeing, but is in the general area in case the PWD has a question
- Show the PWD where to find coupons, and discuss how much food really costs
- Watch tv shows about the health effects of not eating nutritious (but don’t be too scary about it, especially if the PWD is someone who can get easily overwhelmed or experiences severe anxiety–in this case you can discuss food choices in terms that are not so daunting with regards to the health consequences)
- Have the PWD go to the grocery store with you and have him hold the list (if possible, have him read and check off the list as you go–if he is not able to read, that’s okay too! You can sit with him and go through grocery store inserts, pamphlets, magazines, coupon clippings, etc. Just cut those pictures out and make the list out of pictures. You can even draw the pictures!)
- After practicing #6 a few times, and if he is safely independent in public (as in, won’t go with strangers, won’t give his money to strangers, isn’t a harm to himself or others), bring him to the grocery store and have him gather the food on the list while you wait at the front of the store with a book/magazine
- After practicing #7 a few times, practice money skills. Discuss pricing of food and different ways you can make payment. Go through #7 and at the end of each time you shop, have the PWD give the money for payment to the cashier. If the PWD gets nervous, that’s normal. You can go at times when the grocery store is less busy, or teach him how to use the self-checkout line, but ultimately practice will help him feel more comfortable.
- After practicing #8, and if he is safely independent in public, bring the PWD to the grocery store and wait in the car as he shops for the food on the list, and pays on his own.
- Have the PWD make the grocery list on his own, check it over to make sure it covers essential items that are financially-responsible choices.
- If not yet learned, teach the PWD transportation options like the bus. Public transportation systems have disability-accessible bussing but the more inclusive the better (again, depending on the actual, realistic abilities of the PWD). A PWD should live and operate in the least restrictive environment as appropriate. It may take time, and it will be a little daunting for both you and the PWD, but that is a normal part of growing up and in time and with practice, he could gain much independence and allow more free time and balancing of responsibilities for you and your household.
- Have the PWD look up transportation options on his own, and then schedule it on his own, go food shopping, pay, and return home on his own.
- Combine steps 1-12.
Again, this is just a generic example. Some of these steps can be combined or adjusted if the PWD is more advanced, or they can be broken down even more. I’ve broken down the process of making a PB&J into nearly 60 steps before for a client with a disability. The most important thing is that we don’t just give up and do something for a person with a disability simply because it’s the easier and quicker thing to do. Sure, there may be days when you do not have time to pre-teach, teach, and re-teach. When you do have time though, the best way you can love a PWD is by loving their independent drive and spirit. After all, you cannot and will not always be around and in times of need the PWD should feel competent to do as much as he is capable.
This post does not come from a place of judgment. I’ve been there, personally and professionally. I know what it is like to see a loved one go through something difficult and have to maneuver life-changes after the fact. This is just guidance on a tricky part about loving a PWD, and as always I am here if you have any questions! Feel free to email me at firstname.lastname@example.org
Thank you for reading and sharing,
Ashley Jacobson, JD, MA, CRC
Disability Expert and Advocate
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:
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.
- 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.
- 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.”
- 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!
- 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.”
- 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
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 email@example.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
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.
Ashley Jacobson, MA, CRC
For details on the show’s episode mentioned above, click below:
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:
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
Following my last post, you may be wondering, “so where can I start?” Start with changing your instincts in how you assess a situation. When you see someone crying, screaming, losing emotional control, are they hitting themselves? Are they repeating certain phrases over and over? Are they disoriented or confused about where they are or who they are speaking with? Are they using the same language repeatedly when asked questions, showing frustration in not being able to explain the situation? Are their sentences disjointed and shortened?
Of course, as people with disabilities are people first above anything else (and I’ll be diving deep into person-first language soon), they are just as unique and individualized as any other person on the planet. But, if you take the time to quickly assess the situation BEFORE responding, you might see common indicators of a disability. And your best bet if you cannot tell—ASK. You don’t have to outright ask if the person has a disability. Talk to the person in a calm voice. Ask them what’s going on, if they need any help, what they are feeling, what they need.
However, (and I cannot emphasize this enough) do not ask them more than 1 question at a time. It sounds simpler than it is. In everyday communication, we rarely ask one succinct question and wait for an answer. It’s conversational to ask, “How’s it going? What’s going on?” or “What’s your name? Can you tell me why you’re upset?” But to many people with disabilities, before they can answer the first question, throwing another question at them only diverts their attention in a different direction and can quite literally block their brain from processing the information they need to give to respond to any of your questions.
Ask these questions before approaching them. Ask if they need space, and if they do, have an area they can safely go while the situation is being resolved.
Above all else, don’t threaten. Don’t say “do this, or you can’t leave,” or “if you don’t do what I say, I’m taking you to jail.” Those statements may be the truth, but you are much more likely to de-escalate and solve the problem at hand quickly if you try to remove the tension from the situation. Some people with disabilities can be susceptible to extra anxiety and vulnerability. They may not be physically or mentally capable of doing what you are asking, and when they realize this, and cannot communicate that to you, it can escalate the circumstances until everything spirals out of control. Always listen, and not just to verbal cues but nonverbal ones (hand motions, facial expressions, guarding behavior, rocking, etc.). These are small but monumental changes to your approach that can really make a difference.
There are always emergencies that are to be handled differently—but make sure you are correctly identifying the situation as a real emergency. It may not be as urgent as you initially believed once you follow the approaches I’ve given above. Take the time to listen, and provide alternative methods for communication. If the person is not responding to you, ask if they want to write down or type what is going on. Provide an interpreter or translator whenever possible. Ask if there is someone you can bring to help explain what is happening. Your conventional methods for how you communicate or respond in a situation are not everyone’s and they may not even always be the best way to respond. Be open to differences and you’ll be more likely to correctly assess the situation.
For a detailed consultation on responding to situations involving a person with a specific type of disability, please feel to contact me at firstname.lastname@example.org for an individualized consultation.
Ashley Jacobson, MA, CRC
One of the most devastatingly apparent indicators of how our treatment of people with disabilities affects a community is found when analyzing the number of individuals in jails and prisons that live with disability. A 2015 report from the U.S. Department of Justice and the Bureau of Justice Statistics found based on a National Inmate Survey, of those who disclosed, 32% of prisoners and 40% of jail inmates reported living with at least one disability (affecting their hearing, vision, cognitive processes, ambulatory skills, self-care, independent living abilities, or otherwise).* Of those who disclosed their disabilities, most respondents identified as having a cognitive disability.* Cognitive disabilities typically affect an individual’s processing, problem-solving, memory and/or attention skills but range from Traumatic Brain Injuries (TBI) to Down Syndrome.
Putting that information into context of our legal system, think about how truly difficult it would be for a person with a cognitive disability to navigate the legal system. How can you understand your rights if the words being used aren’t in your cognitive arsenal? How can you find an attorney, or decide on a deal or legal approach if you’re ill-equipped to problem-solve? How can you hear all of your options if your brain redirects your focus in the middle of the discussion with your attorney, the police, or others involved in the process? How can you convey to the police or your attorney the legal issue at hand and the situation you are in?
This report raises questions as to how we can appropriately explain a person’s constitutional rights in a way that they will really understand, how we interpret what the person is relaying to us about events surrounding the legal issue, and how we implement appropriate representation, services and sentences.
This is not to say that there are no people with disabilities who should be held accountable for their crimes. This is also not saying that people with disabilities are prone to committing crimes. Rather, this is indicative of systemic deviation—deviation from services, supports, resources and evidence-based strategies towards mass incarceration of a population that could be highly receptive to rehabilitation, or could include those actually innocent. Instead of channeling people with disabilities through the appropriate channels or services, we are making assumptions and rushing them through the criminal justice system.
Further, our system assumes not only that people understand their rights, but that they are literate. There are individuals signing their names to documents of which they have no understanding because their literacy skills are limited.
Now consider a couple of other important facts. From this study, 13% of prisoners and 16% of jail inmates reported multiple disabilities.* Now we aren’t just having to balance the analysis needed for one disability but for co-occurring disabilities. Also, there is a real possibility that many with disabilities did not disclose, whether out of choice, lack of formal diagnosis, or lack of understanding about their diagnosis. The U.S. Department of Justice Report found that men were less likely to report their disability.* Further, based on the shame and stigma surrounding disability historically, mental illness tends to be reported even less. As a special educator and counselor I frequently encountered adults young and old that knew they were different, but had no idea what their disability diagnosis was or that they were even diagnosed with a disability. Because our education system places so much of our disability efforts in the hands of the teachers and parents, and because those individuals are understandably constrained by time and finances in providing an explanation to the students or children, I have frequently encountered adults who have limited understanding in the diagnosis that affects their daily lives. This is a systemic issue, but also a self-determination issue.
Self-determination is an underlying main focus of disability professionals. Self-determination entails a person with the disability being able to understand his reality in living with disability, and to have the power to assess the situations he is in and make decisions on his own behalf. Self-determination skills are the most important skills acquired by individuals with disabilities because it increases their independence, and acknowledges that more often than not people with disabilities are better equipped to speak on their own behalf about where they are at and what they want for their future. As a disability professional, this was always in the back of my mind. However, with caseloads and classrooms brimming with clients or students, and resources limited more and more each year, sometimes it is easy to fall into the pattern of getting through the day to day. How can we think about the future when we are trying to get through the “here and now?” So, while self-determination should always be the underlying concept in any program for people with disabilities, too often children with disabilities become adults with disabilities who do not have a clear understanding of their diagnoses.
So that’s the bad news. Here is why you should care. First, under the United States Constitution and based on every precedent-setting court decision since, people are entitled to certain rights and protections under the law. There are due process and equal protection rights on a federal and state level ensured to all citizens—not all citizens except people with disabilities. We should also care because the incidence of disabilities being diagnosed is on the rise. We are learning more and more about different disabilities and conditions, but yet aren’t using that knowledge to adapt within our communities. Everyone knows someone close to them with some type of disability, or is a person with a disability.
Let’s say someone you care about has a disability–
Imagine that person calls the police for help, but cannot convey what is going on because of a cognitive or communication impairment and winds up getting arrested because they police assume they are drunk and disorderly.
Imagine a close loved one with an autism diagnosis on their worst day, spiraling emotionally out of control, who just needs space from the crowds that are surrounding you out in public. A police officer approaches and the situation escalates because the person cannot follow the strict orders yelled at them in a moment of chaos. Because they are not obeying and they keep attempting to avoid the officer, they are arrested.
Imagine a young man with Down Syndrome, who has worked incredibly hard to get a job he is more than qualified for, only to be accused by other workers for stealing because the coworkers believe people with disabilities are an easy target for blaming mistakes or missteps. The police arrive, and despite this man having a guardian, the police question him alone. Unaware of his support, of his protections, of his rights, of the possible next steps, the man winds up in a whirlwind of overwhelming questions creating stress and anxiety so severe he cannot finish his shift, despite really needing the money to pay rent.
Imagine a child in a classroom for students on the autism spectrum. They are only in elementary school, but are spending time in a resource room for a little extra assistance in learning the material for the day. But the schedule changes unexpectedly, a change this child really doesn’t like. He starts hitting himself and throwing things, and the school’s security officer restrains him for a lengthy period of time. He is restrained in his hands and legs, and is told if he just stops moving he will be released of the restraints but because of his disability, he is unable to comply to the demands and ends up being restrained for a lengthy period of time, in front of his classmates and teacher. He now is scared to go to school, and has a meltdown every morning to the point where he is physically sick.
I don’t have to imagine these events, because they happened (many of which I witnessed first-hand). You should care because it’s happening more and more, and will likely happen to someone you care about. You should care because it might even happen to you. You should care because people with disabilities are more capable today than ever of being successful within their jobs or careers, and support their own families—they have jobs and families that suffer when they are misunderstood, fired, or arrested.
There are several ways that people with disabilities can be better served in their communities, and in return how communities benefit from providing equal rights and opportunities to people with disabilities. The most fundamental way to best serve people with disabilities (and, in turn, the community as a whole) is to provide people with disabilities their full rights under the law. Additionally, officers of the law, teachers, administrators, and community members need to adapt their techniques in order to appropriately assess and resolve any situation without the need of any escalation.
Lately I have been providing trainings to different offices that deal with these types of situations with the goal of not pointing fingers but instead providing simple techniques that can completely change the direction of these scenarios. The focus cannot be on controlling the situation. It must be on appropriately assessing, in order to attain de-escalation (which has the end effect of controlling the situation).
My next post will discuss different approaches for correctly assessing a situation involving a person with a disability in detail, so if you care about the issues I’ve presented from the report mentioned above, please stay tuned!
*And to read the full U.S. Department of Justices Special Report from December 2015 referenced throughout this article, you can find it here:
Ashley Jacobson, MA, CRC
My name is Ashley Jacobson and I have spent more than a decade devoted to disability advocacy. During my undergraduate years, an immediate family member of mine endured a serious car accident which left her facing ongoing rehabilitation for a severe Traumatic Brain Injury (TBI). Her rehabilitation process opened my mind to a world of systemic challenges people with disabilities face on a daily basis. I graduated in Undergraduate Studies with Specialties in Special Education, Psychology, and Political Science from Western Michigan University and then received my Master’s degree from Michigan State University’s Rehabilitation Counseling program (ranked #1 in the nation). Rehabilitation Counseling is a field which empowers people with disabilities through counseling and training to live their most independent and fulfilling lives vocationally, personally, and otherwise. During my graduate studies, I worked as the Program Coordinator for the Building Opportunities for Networking and Discovery (BOND) program for college students on the autism spectrum attending Michigan State University, through MSU’s Resource Center for Persons with Disabilities. After graduating with my Master’s degree, I passed the national Certified Rehabilitation Counselor (CRC) exam and spent time counseling youth and adults with disabilities for a non-profit organization in Michigan.
I quickly realized that there was more I could do to advance the interests of the disability community. Without violating confidentiality, I can attest to the misconceptions, barriers, and problematic vulnerabilities that create an inaccessible justice system. I saw clients reach out to police, attorneys, and others in the community for help, only to be misunderstood. I saw too many of my clients with disabilities dealing with legal troubles based on a lack of accessibility to the right resources.
Truthfully, I also found many actors in our system who were simply not adequately trained in how to approach a legal issue involving a person with a disability–whether that person was a victim/survivor of a crime, alleged to have committed a crime, or needed assistance with domestic violence, family law issues, or educational barriers. I grew frustrated in referring my clients to attorneys because while those attorneys were competent and excellent in their field, they really did not have the background and training in how to approach a case involving a person with a disability. But, pointing fingers at missteps and misunderstandings is not my goal. The only true pathway to a more inclusive system for people with disabilities, is to focus on simple and concrete approaches to making our legal system accessible to the complex and diverse disability community.
Seeing a dire need for attorneys that have disability expertise, I enrolled in an accelerated 2-year law school program at Western Michigan University’s Cooley Law School, from which I plan on graduating in 2018. An honest look at our history will show you that there is room for improvement in how we treat people with disabilities, and this is my focus. I aim to consult members of the community as to how we can accurately assess and identify solutions when handling a situation involving a person with disabilities, and empower individuals with disabilities to be their best advocates while receiving the full protection of their constitutional rights.
This is where this site comes into play. Here I will provide resources and updates on disability issues and the law. What you find on this site does not constitute legal advice to its readers, but rather a resource for people with disabilities and their communities. Please do not hesitate to reach out to me for further assistance or insight.
Thank you for your time and interest.
Ashley (McIntyre) Jacobson, MA, CRC