Quoting “Too Late to Die Young: Nearly True Tales from a Life” by Harriet McBryde Johnson

Harriet McBryde Johnson (1957 – 2008) was an American author, attorney, and disability rights activist with muscular dystrophy and a wicked sense of humor.

hjohnson

Harriet McBryde Johnson sits in her power wheelchair with one hand under her chin. She is behind a desk with neatly organized papers and books. There is a computer next to her side.

I’ve had a lifetime against saying “They mean well” of telethons and the people who love them. In my childhood, telethons were ubiquitous. Easter Seals sponsored the separate-and-unequal crip school I attended. United Cerebral Palsy bought equipment for some of my friends. March of Dimes declared it would “Stamp Out Birth Defects!”—a slogan that made us defectives nervous. They all wallowed in pity, depicted disability—“crippling” they called it—as the worst fate imaginable. They all assumed the only answers were prevention and cure. In most ways, one thon was like the next. But in one way, MDA stood out from the pack. Its pitch had added a punch of urgency; find a cure before they die!


Are you a Jerry’s kid or Jerry’s orphan?

jerrys kid

People with disabilities protesting against the MDA telethon.  An older woman who is in a power wheelchair holds up a yellow sign, saying “I’M A FORMER ‘JERRY’S KID’ STOP THE PITY PARTY.”

Here’s a video to elaborate on the Jerry’s kid/orphan analogy: https://www.youtube.com/watch?v=5tM4tTUMwGE  Jerry refers Jerry Lewis, the MDA telethon’s former longtime spokesperson.


I wonder if the post-ADA generation of people with disabilities, including myself, are becoming too complacent.  For instance, as someone with a “preexisting condition,” I am very concerned about the pending changes to healthcare.  Yet, I am not protesting or calling my legislatures.  I know how bad this sounds, especially for someone who has interned at political offices.

I respect those who are on the front lines protesting and calling.  But perhaps I am too jaded to think that we can change our pending doom or even that our governmental system actually works.  Any thoughts?

Farewell to Amber: Loosing a Close Friend

Dear Amber,

Like most things in our friendship after college, this comes late, drenched in procrastination. Like how you almost never replied to my e-mails despite being an advisor to Able Community (the non-profit housing cooperative we were starting together), even though I know you read every word I wrote.

amber skype

Amber, Carmen, and I on Skype for an Able Community meeting.  Photo Description: A screenshot of a video chat between 3 young women in power wheelchairs from 3 different locations.

It was so easy in college, when we lived in the same dorm. We could talk while we ate about the most random things (like how you named each of your boobs) and I could barge in your room to ask you something whenever.

We talked on AIM after we both graduated, commiserating in our mutual miseries—my hatred of law school and the challenges of having to depend on my mom for my personal care again, and your frustrations of having to live with your parents because you couldn’t find enough personal care assistants in Chicago for grad school. I guess we both got busy and I stopped using AIM, so our contact dwindled.

With the exception of one year in fifth grade when we moved to a new neighborhood and everyone in my new class wanted to be my friend (don’t ask me why), I was never in with the cool kids. Even in college when I lived in a dorm with a majority of students with disabilities needing personal care and a few live in personal care assistants students, I never quite fit in or was popular.

You never made me feel excluded or that I wasn’t cool enough to be around you, although you were a grade younger than I was and one of the cool kids of the dorm. I would go watch movies in your room after you got into bed and asked if you needed anything as I wheeled out. When I said that I wanted to smoke pot before graduating, you agreed and made it happen.

I was surprised at the connections to “the good stuff” that we already had in the dorm and that I was able to inhale from the pipe, as a group of us took turns inhaling from it outside on the patio of our dorm. I’ll always remember that one of the personal care assistants helping us answered her phone, saying “I’m helping the gimpies smoke pot.”

I was surprised that you talked about our first time smoking together in front of your mom years later when we went to a mutual friend’s house for a party; somehow it felt like the years we didn’t see each other vanished and we just continued where we left off. My parents would still kill me if they knew about this; they even oppose medical marijuana. Good thing they don’t read my blog.

I can’t believe that it’s been almost 2 years since I was on my way to see you because you were in the hospital for pneumonia when your sister e-mailed me not to come; it was too late. I got that e-mail the day before I was going to visit you with flowers, right before my meeting in Springfield. I really regretted waiting to visit you when I was conveniently in the area for my Springfield committee meeting to see you; I still do.

I didn’t think it was that serious and even jokingly e-mailed you weeks earlier that I thought I was dying when I had pneumonia, but that I was sure you’d pull through; I shouldn’t have joked like that. Honestly, when I met a group of our college friends I saw when I visited Chicago, we’d go over a list of our friends who we were concerned about health-wise and your name was never on the list. Even though we knew that you had muscular dystrophy (MD), a genetic disability that’s progressive and can result in an early death, you seemed strong. You were healthier than I was in undergrad, I was always getting colds and what have you while you never seemed sick wearing a college hoodie instead of a coat in the winner.

When I decided not to write another blog post or edit another video until I posted yours, I had no idea that it would take me so long. Part of it was probably unconsciously choosing to delay dealing with the finality of your death, and part of it was wanting to caption your video so it would be accessible to everyone. When I finally decided to post it for your family without the captions, I lost my Macbook battery power charger that had the video on it and my Youtube password. I finally bought a new charger and found the password… I sent it to your family a week ago and I finally figured out the captions!

Here’s the link to the video: https://youtu.be/CTnulPHgMVM.

Watching this video interview we did the last time I saw you a year before you passed away made me regret not asking you more important questions, not just promoting Able Community… like about your Ph.D. dissertation, your work in DC, your everyday life. But somehow, this video, despite all of this, seemed to immensely touch your family. In my Korean culture, a friend’s family becomes my family. So in that tradition, I’ll consider your family like my own. In fact, your sister is helping me go to Springfield because my sister cannot.

Your mom wanted to collect what everyone said at your memorial into a book. Here’s what I wrote for your memorial:

I remember the good times I had with Amber in our undergrad dorm, Beckwith Hall, when I would go watch movies with her late at night after she was in bed, our liberal talks, and scheming to go to Korea together. We were one of the few students at our dorm and at the campus at large who adamantly opposed Chief Illiniwek, as a racist Native American mascot.

Although Amber was a grade younger than I was, she was a cool person I wanted to hang out with more. I remember when we were both in undergrad, she invited me to see a young state senator she had a crush on. I wanted to go, but I didn’t because I had too much homework. I’ve always regretted not going to see the politician, who would later become our first African American President. Amber was always ahead of her time.

During my senior year, when students took to the streets after the basketball team lost to University of Michigan, Amber and I joined them. We rolled towards Wright Street, as hundreds of Illinois students were walking in the street, angrily chanting obscenities at Michigan. We saw the mob congregated at the alma matter, which some students were climbing. And headed back to our dorm, where my night personal assistant was annoyed that we were late, but it was so crowded we couldn’t have gotten back any faster.

Before graduating, Amber joked that she would follow me to grad school in California, where I was going to law school, and steal all of my personal assistants. We both had difficulties upon graduating undergrad. Amber returned home from starting grad school at UIC with challenges finding personal assistants while I had problems with accessible housing and personal care. Amber and I commiserated with each other over AOL instant messenger during this time.

I last hung out with her last year when I visited campus. She was always great about being interviewed for my various video projects, so I interviewed her for the second time in her Daniels dorm room. Before the interview, she expressed some annoyance at me that the video from the first time I interviewed her was still being shown in disability studies classes. Apparently, someone recognized her as the angry radical in the documentary we made in undergrad. I don’t agree with the angry part, but she was a great progressive advocate for social justice across the board.

She led such an amazing and bold life. I was in awe of everything she accomplished, her values, and international travels. I appreciated that she believed in disability rights and independence so much that she wanted to help with Able Community, a housing cooperative for people of all abilities that we are starting. Amber was on our advisory board. I’ve just been appointed to the Illinois Statewide Independent Living Council, and told Amber I was going to nominate her to the Council since she was so perfect for it. She was extremely excited about it. Amber is someone I immensely respected. I will and do really miss her. I will remember her whenever I visit the university and continue our disability work.

I still miss you, Amber.

 

Much love,

e

What is Limited Scope Representation?

What is Limited Scope Representation? Or Why Limited Scope Representation, AKA Unbundled Services, Matters to You!

If you ever couldn’t hire an attorney because of the costs involved, considering representing yourself in legal/administrative proceedings or you think you may ever need to hire an attorney in the future, keep reading. This post is for you.

They say that an attorney who represents herself has a fool for a client. Having been a fool on more than one occasion, I know first-hand how stressful it is to have to play the role of the plaintiff and attorney simultaneously. Although I was successful in representing myself, I would not have if I found an attorney experienced in the administrative hearings I faced. I also had times when I could not pursue litigation because I couldn’t afford the attorneys’ fees. If you have ever been in a similar situation, limited scope representation may be the answer for you.

Puzzle pieces demonstrating limited scope representation from the WI State Bar on this link,

Puzzle pieces demonstrating limited scope representation from the WI State Bar on this link,

The following has been adapted from the California’s Court online publication, “Limited-Scope Representation” http://www.courts.ca.gov/1085.htm:

Limited scope representation is when you and a lawyer agree that the lawyer will handle some parts of your case and you will handle others. This is different from more traditional arrangements, where a lawyer is hired to provide legal services on all aspects of a case, from start to finish. Limited scope representation is sometimes called “unbundling” or “discrete task representation.” This is a relatively new concept in the legal profession and it may not be offered by many attorneys. The legal profession is based on a lot of tradition and is slow to change with today’s increasingly high tech and information hungry society.

When you cannot afford to pay for a lawyer to handle your entire case, limited scope representation can be a great way for you to have legal help with your case while keeping costs down. Courts approve of limited scope representation because they want to encourage people to get as much legal assistance as they need to protect their rights. They know that you will do a better job of following proper court procedures and presenting the important information to them if you have the help of a lawyer during the more complicated parts of a case, than handling the case all by yourself.

Here are some examples of limited scope arrangements:

  • Consult a lawyer and get legal information and advice about your case when you need it.
  • Hire the lawyer to represent you on certain issues in your case (like attend a Special Education IEP meeting) while you do the rest yourself.
  • Hire the lawyer to prepare the forms and other court documents but file them yourself and represent yourself at the hearings.
  • Hire the lawyer to coach you on how to represent yourself at the court hearings and help you prepare the evidence that you will present in court.
  • Hire the lawyer to help you with the more complicated parts of your case, such as discovery and legal research while you do the simpler tasks yourself.

Is a limited scope arrangement right for you?:

  • Discuss your case with a lawyer in depth, including areas that you want to handle yourself. If you do not discuss the whole case with the lawyer, even the parts that you think are simple and want to handle yourself, you will not know if you have overlooked something that is legally important. Once you have had this discussion, you and the lawyer can agree on whether a limited scope arrangement will work for you and your case and you can be comfortable that you have identified any hidden complications.
  • Decide if you are willing to take on full responsibility for those parts of the case you will handle on your own. Remember that the lawyer went to law school and probably has years of experience in this area. That means that she will know things you do not about the legal process. If you instruct your lawyer not to take certain steps, either to save money or because you want to remain in control, you will have the full responsibility for the outcome in the parts of the case you do yourself, even with a lawyer coaching you.

Limited scope representation vs. traditional full representation?:

  • By only paying a lawyer to do those parts of your case that you cannot do yourself, you can save money on legal fees.
  • The lawyer can use his or her time more efficiently by focusing that time on things you cannot effectively do yourself and leaving other more time-consuming tasks to you.
  • You can keep greater control of your case than if the lawyer handles the entire case.
  • Your case has a lot of technical issues or is very time-sensitive.
  • You do not have the time to put into educating yourself and effectively handling many of the tasks that you need to do.
  • There is a lot of stake in your case, so if you lose, you could lose your home, lose rights to see your children, or owe a lot of money.

Limited scope representation vs. representing yourself?:

  • Limited scope representation can often also be a better alternative than representing yourself.
  • Having a lawyer helping you with parts of your case can save you a lot of time and energy because the lawyer can educate you about the process and your specific issues. She can also help you find self-help books and other resources so you can handle the parts of the case when you are on your own.
  • A lawyer, by being more removed from your case than you are, can see things about your case that you cannot. A lawyer can help you focus on the legal issues and on what the court can do for you, and not let yourself be distracted by other issues and emotions.
  • A lawyer can identify potential problems or hidden complications early on, so you can avoid making a costly mistake.

Limited scope representation may be a particularly good option for people with disabilities and moderately income people, or anyone who wants to keep their legal fees down, because it is more cost effective than traditional legal representation based on hourly fees and billable rates that could be $300 or more per hour. If you are interested in seeking limited scope representation in disability law matters in the state of Illinois or California, contact the Disability Law Collective at esther@disabilitylawcollective.com to set up a free thirty minutes consultation about your legal questions.

To Gimpy Law Readers, An Explanation

I realize that I have not updated in some time. I just found out that Gimpy Law has been nominated for The Expert Institute’s Best Legal Blogs. I had no idea that such a competition existed. I am very curious who made the nomination. Thanks very much to whoever you are.

I do feel that I owe Gimpy Law readers an explanation for my absence from posting. I have been keeping busy, having just been appointed as the Co-Chair of the Attorneys with Disabilities Committee for the Women’s Bar Association of Illinois and a member of the Statewide Independent Living Council of Illinois. Also, in addition to traveling a lot for legal conferences, I have been putting out fires for officially launching my law practice, Disability Law Collective. It has been a little over a year since I started my legal incubator program and I haven’t officially launched yet. I know that this seems strange, considering I have friends who set up their law practices much quickly (like in a week); everyone has their own pace.

It seems like every time I try to launch, something goes wrong… major website malfunctions and redevelopment, office inaccessibility, taking better care of my health, pulling my hair out about my non-profit housing cooperative—Able Community, and worrying about finding clients (as my Torts and Civil Rights Professor described herself, I too am a chronic worrier). I’ll spare you all the boring details. I am not sure if I am overreacting, but I became discouraged that I have to face more hurdles than my peers without disabilities. I mean I usually don’t feel bad about myself or my disability and I never throw myself a pity party, but the totality of the circumstances triggered it.

The Thinker, a sculpture by Auguste Rodin, shows a nude male figure of over life-size sitting on a rock with his chin resting on one hand as though deep in thought. This picture is from this museum's website, Musee Rodin.

The Thinker, a sculpture by Auguste Rodin, shows a nude male figure of over life-size sitting on a rock with his chin resting on one hand as though deep in thought. This picture is from this museum’s website, Musee Rodin, in Paris.

Although I am accepting clients, I would like to get all of my ducks in a row before I officially launch. But I am pleased to announce that I am very close to launching Disability Law Collective. I have been working on legally substantive blog posts that I have been saving for closer to my launch. I’m not sure if this will change Gimpy Law’s readership, but I still plan to mix in posts about social issues.

In short, to be continued. Please stay tuned.

Civil Rights Conference & ABA TECHSHOW

This week, I will be attending Chicago-Kent College of Law’s Section 1983 Civil Rights Conference and the American Bar Association’s (ABA) TECHSHOW. I’d love meeting up with you if you will be there. Below are more information on both events:

Chicago-Kent College of Law’s Section 1983 Civil Rights Conference

Section 1983 Civil Rights Litigation Conference: Liability arising out of §1983 presents a continuing challenge for all municipal lawyers, private practitioners, and litigators who try cases in this dynamic area. Keeping up with this ever-changing environment is critical. In this two-day conference, you will learn both the fundamentals and more advanced aspects of §1983 practice and trial skills, and analyze the latest judicial decisions. Visit the program website for more information.

American Bar Association’s (ABA) TECHSHOW

The ABA TECHSHOW Conference and EXPO is where lawyers, legal professionals, and technology all come together. For three days, attendees learn about the most useful and practical technologies available. Our variety of CLE programming offers a great deal of education in just a short amount of time.

Michael Brown: Civil Rights and Racial Justice for All

This post seems relevant to the recent Ferguson protests in response to the grand jury decision in the Michael Brown case.

Gimpy Law

Michael Brown Michael Brown’s picture in his graduation cap and gown, holding his Normandy High School diploma, from this online article.

Darren Wilson, has been named as the police officer who shot Michael Brown, an unarmed teenager, on August 9, 2014. This shooting occurred 2 years, 5 months, and 14 days after an unarmed, teenaged Trayvon Martin was shot and killed by George Zimmerman, a neighborhood watch coordinator. Unfortunately, this scenario has become commonplace; an African American being subjected to police brutality, excessive force, and even death.

Perhaps this is why 42 U.S.C. § 1983, referred to as “Section 1983,” which is part of the Civil Rights Act of 1871, is still in use today. Section 1983 allows governmental actors, including police officers, to be liable for damages, declaratory, or injunctive relief for violating a citizen’s rights, such as the Freedom from Excessive Force under the Eighth and Fourteenth Amendments. Sadly, this legislation, also known as the “Ku Klux…

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