Tag: inclusion

The Vulnerables: Disability in a Pandemic

woman in wheelchair in kitchen
Photo by Marcus Aurelius on Pexels.com

By Ashley Jacobson, Esq., MA, CRC

The coronavirus, also known as COVID-19, has sunk its teeth in our daily routines, shaking up our normal practices and forcing us to grapple with its consequences.  In those discussions of the COVID-19’s impact, you’ve likely heard repeatedly that there are some people more at risk to contracting and experiencing severe symptoms of the virus.  Of those at risk, people with disabilities have often been seen and discussed as “vulnerables” who are not worthy of preservation.  As a disability advocate and attorney, I wanted to explain where that notion comes from, while further promoting that it’s not an accurate evaluation of the worthiness of the uniquely-abled (my invented phrase for people with disabilities).

Though disability advocates have fought hard to receive equal treatment as citizens, the plight of those with disabilities is far from over.  It’s cemented in a well-documented battle throughout the history of humankind, which created a world built to exclude.  People with disabilities were isolated, killed, not trusted, malnourished, shamed, ridiculed, and not educated properly for centuries.

Most families have someone in their family tree who experienced this cruel level of stigma based on disability.  I’ve recently learned about a link to this historical discrimination in my own family.

In the 1940s, after barely surviving starvation under Nazi occupation in the Netherlands, my grandmother and her 11 siblings and 2 parents made the trip to the United States.  They suffered for years under the Nazi regime, and wanted to return to my great-grandmother’s home country–the US.  It took over a year after the end of World War 2 for my great-grandparents to get passports for all of the children.  They traveled to the U.S. as a family, but were torn apart when there was a problem with one of the children–Nilah, my grandmother’s sister–at Ellis Island.

Nilah had epilepsy and she was not allowed immediate acceptance into the States.

Many readers may know someone (or be someone) with Epilepsy.  If you’re familiar, you’re probably thinking “Why would Epilepsy be a problem when entering the U.S.?”  Well, today, it wouldn’t be.  But after WWII, among the medical community there was a false notion that Epilepsy was contagious, or hereditary, or just plain not what the forefathers would want in this country.  So, upon entering the U.S., my great-grandfather was allowed entrance with 11 of the children, including my grandmother, while my great-grandmother and Nilah were holed up in Ellis Island for months.  They were tested emotionally and physically in isolation, while my great-grandfather looked for work and cared for 11 children with $400 to his name, while living at my great-great grandmother’s home.

Shocking to no one today, Nilah was not contagious, and after several months was allowed to move with her mother to meet the rest of the family in Philadelphia.  But Nilah’s journey with disability wasn’t safe from danger.

Once settled in the U.S., Nilah was taken to a very well-known medical facility and my great-grandparents were told she should receive a lobotomy for her Epilepsy.

In my graduate studies in the disability rehabilitation counseling program at Michigan State University (HIGHLY RECOMMEND THIS PROGRAM), I watched in-depth videos and read about lobotomies.  You may have heard of these procedures, which historically damaged the brain using an “ice-pick”-like device (a great story on these linked below).

Though Epilepsy can be a very serious condition, the notion that it would become less serious by damaging Nilah’s brain with a lobotomy seemed unfathomable to my great-grandparents.  The day they turned down the lobotomy gave Nilah the chance to adapt in her own way to the world as a woman with a disability (though I wonder if she ever personally identified herself as part of the disability community or if it was just something she thought was unique to her).  Nilah went on to have a loving life and family of her own.

But Nilah’s lobotomy recommendation by that doctor still doesn’t sit right with me.  Instead of finding ways to healthily incorporate Nilah into the world, or importantly looking at alternatives first, doctors flippantly and far-too-quickly recommended an incredibly dangerous, serious procedure.

But Nilah’s story isn’t unique.  People with disabilities have been put in compromising, dangerous situations forever.  Into the 1970s, people with disabilities who were completely capable of inclusion in typical society were institutionalized–many in horrific environments resulting in abuse.  Willowbrook became infamous for such abuses including lack of nutrition, individuals living in cages, living in feces and human waste, lack of appropriate medical care, overcrowding, under-staffing, and under-valuing people with disabilities including those with Down Syndrome, Epilepsy, Depression, Post-partum Depression, symptoms now-indicating potential Autism diagnoses, and various other conditions fluctuating from mild to severe.

Many of the individuals in institutions like Willowbrook were capable of living among those without disabilities, but were sent to the institutions after their parents were given discriminatory guidance by medical professionals who expected and understood too little.  There was a lawsuit (linked below) which held that the individuals living in Willowbrook had their constitutional rights violated, and the major de-institutionalization movement began to emerge.  This movement led to major disability institutions “transitioning” its occupants into the community.

But de-institutionalization while valid in theory, was ill-equipped in practicality.  There were not sufficient community supports that provided safe housing, education, and jobs for individuals with disabilities who had been segregated from society for most of their lives.  From that point onward, many people with disabilities were forced to live on the street.  Many were put in situations that left them financially and physically vulnerable.  The perceptions of those without disabilities towards people with disabilities was incredibly damaging.  They saw people with disabilities as “dirty, homeless, beggars.”

Then, when wars added returned-soldiers with disabilities to the community, the number of homeless individuals with disabilities grew substantially.  Sitting on the street, with caps in their hands, begging for money and work–the term “handicapped” was popularized though derogatory in origin.

This societal view towards people with disabilities hasn’t caught up with the actual movement and progress spearheaded by those in the disability community.

Through repeated stigma, discrimination, and seclusion people with disabilities communicated their abilities, their willingness to work, their dreams for a more accessible and inclusive future.  Many have proven to be leaders in their communities, and yet, they are still viewed as “vulnerable” and “unworthy burdens” on our system.

This is why, when a pandemic hits, they are seen as less worthy of medical care.  When a “normally healthy” person and a person with a disability both are in the running for the last remaining ventilator, the “healthier” one receives it.  This is why people with disabilities were terrified of the orders coming from states indicating medical protocols deeming us less worthy of that same medical care.  Less worthy, despite being just as influential (if not more influential) as other contributors to our communities.  Less worthy, despite also being spouses, parents, and service-members.

In Michigan, Governor Whitmer participated in a disability teleconference this past week which I observed via Zoom (note, “observed”–because actual people with disabilities were not able to meaningfully participate in the discussion and instead agency leaders communicated what they believe the disability community needs during the coronavirus…but that’s to be discussed later).  In this discussion, Whitmer indicated that an executive order had been signed indicating people with disabilities as worthy of the same medical access and care as those without disabilities (new post in the works on this).  However, it became even more clear to me that the topics we discussed were necessary because stigmas and discrimination against those with disabilities have a long way to eradication.

People with disabilities are still seen as unworthy–still seen as acceptable deaths in a pandemic where the deaths could be avoided.  Protesters of my state, Michigan, were vocal about this.  It’s “only” the vulnerable individuals who will die, and they are likely to die anyway!   Coming from one of those “vulnerables” who serves her community day in and day out, I hear you, and you are wrong.  Most of us aren’t more likely to die than you outside of a pandemic. We are more likely to manage health conditions, lack of access to healthcare, employment, and education.  But more likely to die, more worthy of dying?No.

However, I recognized that stigma the instant it radiated out of your hateful mouths into your megaphones.  It’s not new, its just more brazen.  And I’m here to tell you that the disability community is not going away.  In fact, we may even be more equipped to surviving the perils of this pandemic than you are.  We’ve historically been forced to live for long periods in isolation, on less money for performing the same work as you, with more barriers in our way built by those who dismissed our existence–yet, we’ve remained.

We are not just worthy.  We are just as worthy as you are.

 

 

Resources:

NPR story on lobotomies

NY ARC v. Rockefeller

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

 

 

 

 

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

 

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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