Tag: special education

Self-Determination: how to love, but empower your loved one with a disability

Self-Determination: how to love, but empower your loved one with a disability

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

  1. Watch a cooking show on tv that discusses nutrition and healthy eating
  2. 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)
  3. 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
  4. Show the PWD where to find coupons, and discuss how much food really costs
  5. 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)
  6. 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!)
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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 legallyabled@gmail.com

 

Thank you for reading and sharing,

Ashley Jacobson, JD, MA, CRC

Disability Expert and Advocate

 

 

 

 

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