disability and death

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Recent Updates.

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I haven't been able to write as much as I usually do the past couple of weeks, so I thought I'd catch you up on a few highlights. 

The ALS Ice Bucket Challenge, ways to contribute and important updates.

Like half of the US, I did the ALS ice bucket challenge.

A friend of mine has ALS, so whether or not you decide to do the challenge, I encourage you to donate to his film. He's an epic storyteller and I cannot wait to see his film. 

Learn more about my friend Patrick. 

Learn more about my friend Patrick. 

THIS IS VERY IMPORTANT...THIS IS VERY IMPORTANT...THIS IS VERY IMPORTANT...

Secondly, Patrick uses a computer that is controlled by his eyes to communicate. This is how he talks. It is his only way of communicating. New Medicare laws won't allow computers like his to access the internet or have special software installed on them. If his current computer breaks, he will no longer have the ability to communicate with his friends and family. Please read about this and sign the petition.

You read that, right? IT IS VERY IMPORTANT.

Voting opened for SXSW 2015 (and I'd like your support).

The community voting period for 2015 SXSW panels has opened up. Community support is an important part in getting your panel accepted. I would LOVE your support. Please read about my panel and watch the amazing video one of my co-panelists put together.

Please vote for 'Enhancing human functionality with technology.'

Please vote for 'Enhancing human functionality with technology.'

Holly, Elliot and I need your support.

And while you're at it, I recommend voting for these worthy panels:

Done voting for everyone? Read more about my interest in the topic. 

I sang karaoke with Jeremy. 

We sang Weezer (2x) and I WAS wearing pants. They were red. 

Jeremy and I have a long history of performing in karaoke bars until we no longer have a voice. Since we haven't lived in the same city for 12+ years these karaoke reunions are noteworthy. 

I named five baby hedgehogs.

My friend Cristina Love named her hedgehog after me after I bullied her into it at our 20 year high school reunion. Well Ms Anna Virginia Picklesworth has been a busy girl and had 5 babies. 

I can probably hook you up if you're looking for a new pet. 

I can probably hook you up if you're looking for a new pet. 

I embarrassingly narrated a bear incident. 

Thanks for reading! My travel scheduled is a bit busier than usual this month (and last) but I will be posting more soon. 

Thanks for reading. All of the articles on VirginiaIngram.com are by Virginia Ingram, a freelance writer, account planner and digital strategist who is consulting in the marketing, social media and caregiving world. She writes regularly here and on Medium.com. If you would like to read something similar, choose from the tags and categories below. If you need help communicating to the people most important to you, you should hire Virginia. 

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SXSW 2015: Enhancing human functionality with technology

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The idea submission period for the panel picker for is officially closed and I'm excited to tell you about my submission for SXSW 2015. I will be building on the 2013 and 2014 conversations and have asked two wonderful panelist to join me for a discussion; Holly Stiles of Disability Rights NC and Elliot Kotek of Not Impossible. 

Enhancing human functionality with technology

As kids we long to be superheroes. We yearn for jetpacks, space travel and teleportation.

Hopes get dashed when we discover Batman's life costs $682 million.

Commoditized space travel thrills us, but then we realize we'll never go. We fund Kickstarter space travel projects and dream practically. We hope for chargerless electronics and productive commutes to work.

Our parents get sick, our peers get debilitating diseases and we take on caregiving responsibilities we didn’t foresee.

We ponder the practicality of jetpacks, realize they may never happen and realize we may be disabled at some point.

We forget about our wishes and look for things to simplify life; ways to interpret needs of someone who can't speak or how to pay for sh*t you need if you fall ill.

It doesn't have to be dismal and we don't have to settle. We can design smarter solutions to make life better for everyone.

Join us for a conversation with advocates who are actively looking at solutions to better humanity.

How are you advocates? Holly is a disability rights lawyer. She has dedicated her life to helping people with disabilities. Eliot is a maker. He works with his team to build solutions that are immediately deployable. Virginia is solving Alzheimer’s related problems and crusading to give a voice to people who are not equipped to speak for themselves.

What do you have against jetpacks? Nothing. We’d love to tool around town with one. However, we often think jetpacks don’t really solve some of our biggest problems and that’s what we’d like to do.

Do you *really* think everyone is going to be disabled? Being disabled means you have a physical or mental condition that limits you. Maybe your movements, maybe your senses or maybe you can’t do all the activity you once could do. All disabilities aren’t catastrophic or permanent, but at some point EVERYONE will have something they can’t do. We hope to shine the light on elegant solutions that work for everyone and look for ways to cost-effectively make lives better.

Do you have any examples of things that were created for someone with disabilities that benefits me? Dragon Dictate was developed for individuals who could not use a keyboard or mouse. It quickly caught on with CEOs who wanted to dictate directly to their computer instead of their assistants. Today, we interact with our friend Siri while driving cars and looking for information.

Why should I care? You probably don’t. But one day you may need to care. When you do, you’ll realize most of us don’t have access to the kind of equipment or services we need to be independent and live at home. If we design for people with disabilities we may be able to find solutions that benefit us all.

Why am I interested in this?

I am the primary caregiver for a family member who has Alzheimer's. Providing care for her, on the heals of my father's death, made me realize we all will become disabled at some point. That disability may be temporary (a broken foot, recovering after having a baby) or it may be permanent (I don't need to be illustrative here). Our world is not set up for this. I want to help solve some of these problems and, in the meantime, I want to advocate for people like Holly Stiles and Elliot Kotek who are doing amazing things to help us solve these huge problems. 

About Holly

Holly Stiles is an attorney who has dedicated the last five years of her practice to advancing the civil rights of individuals with disabilities. She received her Juris Doctorate in a 2007 from New York Law School, and a B.A. in Ancient History from UNC Chapel Hill in 2003. As a person with hearing loss, Holly is keenly interested in how we use technology to include people with disabilities in the world.     

Holly is a lawyer who is looking at the practical realities of living life with disabilities. She believes having a disability doesn’t mean a life lived in the shadows.

About Elliot

Elliot Kotek is a maker who looks for cost-effective ways to solve life’s big problems; whether it’s helping a graffiti artist with ALS find his voice or children throughout the world live a better life with 3D printed limbs. A bit of an overachiever, the Australian expat has a law degree, a B.Sc. in Pharmacology & Toxicology, studied at Lee Strasberg Theatre Institute in New York and completed UCLA's Professional Program in Screenwriting.

Elliot is the co-founder of Not Impossible and an impressive storyteller. In fact, Elliot and his team put together the amazing video about Daniel - a boy growing up in war torn Sudan who benefited from a 3D printed limb created by Not Impossible. I encourage you to watch the incredible story.


All SXSW talks are approved by the community (i.e., you!), the SXSW Advisory Board and SXSW Staff. The community is the first to vote with the voting period opening on August 11. When the time comes, I would love your vote of support. 

Thanks for reading. All of the articles on VirginiaIngram.com are by Virginia Ingram, a freelance writer, account planner and digital strategist who is consulting in the marketing, social media and caregiving world. She writes regularly here and on Medium.com. If you would like to read something similar, choose from the tags and categories below. If you need help communicating to the people most important to you, you should hire Virginia.   

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Using social media to help with caregiving.

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I am spoke at the Triangle Caregivers Conference in Durham and Raleigh in June about ways to use social media to help with caregiving. You can go to the Triangle Caregivers Association to download the presentation and my notes. 

Summary of the topic.

Using social media to help with caregiving. 

Like many caregivers, I have found solace and support on social media. In this course we will explore ways to find the right social media networks for your situation and how to use social media to find caregivers with similar interests. At the end, we will provide tips for online tools which will help with the day-to-day management of caregiver tasks.

  1. Finding your voice: identifying the right social media channels for you. Here we will go through an overview of some of the social media networks caregivers are using and talk about the way caregivers are currently using them. Participants will have an opportunity to self identify the ones that make sense for them. We will not go into social media 101 training since it is likely most participants will have experience using at least one social media channel. Instead, this will help them see that there are other networks they can use as well.
  2. Finding your community: identifying groups that have people with similar needs. Here we will go though a few example of caregiver networks that currently exist and give tips for finding the networks that will work for each of the caregivers.
  3. Looking to collaborate: identifying the appropriate online collaboration tools for you and your support group. Most caregivers are overwhelmed. They have people who want to help, but the helpers don't know what to do, and the caregiver is too overwhelmed to help find a way to involve them. We'll go through a few online collaboration tools that can help with the day-to-day management. 

Many thanks to ALZNC, Transitions LifeCare and Guiding Lights Caregiver Support Center for inviting me to do the talk and congratulations on a wonderful conference. 

Thanks for reading. All of the articles on VirginiaIngram.com are by Virginia Ingram, a freelance writer, account planner and digital strategist who is consulting in the marketing, social media and caregiving world. She writes regularly here and on Medium.com. If you would like to read something similar, choose from the tags and categories below. If you need help communicating to the people most important to you, you should hire Virginia.   

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Elvis Costello.

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Last night I had the great pleasure of watching Elvis Costello perform at the beautiful Tennessee Theater in Knoxville. The show was a real treat. It was just Elvis and an amplified acoustic guitar. No Attractions. No back-up band. Nothing. 

His voice sounds amazing and he charmingly walked us through stories from his past with a sense of humor and modesty. He performed three sets and invited his opening act, Larkin Poe, to perform with him on a few of the songs. 

Since he played solo many of the songs you know by heart sounded refreshingly new. A few favorites from the show. 

Alison 

Shipbuilding

Will You Still Love Me Tomorrow

He also played delightful surprises like Will You Still Love Me Tomorrow by the Shirelles. 

Veronica

Veronica was Elvis' highest charting song in the US and my introduction into Elvis. In 1989 I knew the song was about an elderly woman, but I found it playful and fun; a celebration of a woman's life. Now, with a family member with dementia the song still has the carefree tune, but has a much deeper meaning. I'm not sure I'll be able to listen to the song again without volleying back and forth between happiness and sadness.  

Watch the video, and listen to his introduction and closing remarks. 

25 years later we still don't know much more about what is happening inside the brain of someone with dementia, but Elvis has a nice way of enjoying the moments you have. In the intro Elvis says, "so you just sit there, and bounce around the years with her." 

Thanks for reading. All of the articles on VirginiaIngram.com are by Virginia Ingram, a freelance writer, account planner and digital strategist who is consulting in the marketing, social media and caregiving world. She writes regularly here and on Medium.com. If you would like to read something similar, choose from the tags and categories below. If you need help communicating to the people most important to you, you should hire Virginia.   

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The Longest Day.

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June 21 is the longest day of the year. It's the summer solstice and has the most daylight hours in the northern hemisphere. 

On the Longest Day, the Alzheimer's Association asks those who are affected by Alzheimer's create fundraising teams to support favorite activities. To honor of the Longest Day events AlzLive created a collection of caregiver stories by those who like to write. They asked me to write a story for the series.

A young caregiver speaks up! on AlzLive for the Longest Day. 

A young caregiver speaks up! on AlzLive for the Longest Day. 

 

AlzLive's Longest Day series

When you are a caregiver for someone you have a job that lasts day and night. On the longest day tomorrow, perhaps you can take a few moments to think about those who need help and those who provide the help. 

Give the stories a read. I'd love to hear your thoughts. 

Thanks for reading. All of the articles on VirginiaIngram.com are by Virginia Ingram, a freelance writer, account planner and digital strategist who is consulting in the marketing, social media and caregiving world. She writes regularly here and on Medium.com. If you would like to read something similar, choose from the tags and categories below. If you need help communicating to the people most important to you, you should hire Virginia.