A Latinx disabled woman and an Asian disabled woman chat and sit on a couch, both holding coffee mugs. An electric lightweight mobility scooter rests on the side.

So it’s once again time for A Chronic Voice’s monthly linkup. This month’s words are uniting, defining, allocating, educating, saving.

I have wanted to create this project for years, and now it’s looking like I may have found the right folks to help me make it a reality.

I’m super-excited about it and want to explain what I’m doing and what my vision is for its future.

I view all of my readers and cocreators as likely candidates for participation—as it comes closer to reality, I’ll share links and participation opportunities!

For now, though, I want to let you know what I am doing and why I’m so excited by Hours Well Spent.

Uniting the disabled community

Part of my goal for this project is to unite the disabled community.

I’m using disabled in the widest possible sense, as involving all people who fit under the social and/or medical model of disability.

Chronic health, mental health, differing sensory processing—all of these identities fit under that “disabled” umbrella in my mind—and I want all of you to participate in Hours Well Spent.

Most disabled folks face multiple life challenges, including social stigma (from others and/or internal), social isolation, and the actual challenges our disabling conditions cause.

In many ways, those social weights are much heavier than the actual limitations, and we’ve all experienced these challenges to some degree.

What I’m creating is a space for us to dedicate our time to helping one another to manage these weights together, while creating a relatively safe space to socialize and connect with others who are managing similar emotional challenges.

a group of men and women, some with visible disabilities, smiling as one member takes a picture on his smartphone.
We are a diverse group, and isn’t it nice to hang out and enjoy time with one another?

I suspect that many of us are tired of pretending to be okay for our abled friends and family and want to participate in a space where everybody understands that pressure.

Many of us have also had points where we felt like a burden and like we needed more help than we were capable of giving.

The design I’m working on will create a space for us to offer help to one another and accept help from one another.

Every time you succeed in helping another person, you’re reinforcing your self-efficacy, one of the concepts most damaged by both being disabled and by applying for social welfare support.

We deserve to be seen as full beings, capable of providing as well as recieving, and that just isn’t recognized enough.

Defining the terms to understand the project

Self-efficacy is the belief that you can successfully do something. That sounds vague, but it’s a very specific concept. It’s related to and sometimes conflated with self-esteem, which is a belief in your inherent value. Self-efficacy very much about doing rather than being.

Self-efficacy is what most jobs value. It’s that willingness to say “I can do that” with confidence rather than “maybe I could” or a fear to try.

The best way to develop self-efficacy is to successfully try and do things, and that belief is greatly damaged both by being diagnosed with a disability and by applying for social welfare. Disability, especially shortly after diagnosis, often has this mental image of incompetence/incapability repeatedly reinforced due to ableism.

There’s a lot of shame involved in deciding to apply for disability or social welfare programs. The applications for disability and social welfare tend to be unreasonably complicated and written in government legalese that only the people evaluating the documents can correctly interpret.

I also want to introduce you to the concept of time banking, which is a large part of the inspiration for this project.

two people are visible on a computer screen, chatting
Time exchanges can be as simple as sharing advice via video chat.

Time banking is a form of alternative currency where time itself is the currency.

This is a great equalizer as everybody on earth has 24 hours in their day, and while many of us with disabling conditions have fewer free usable hours, we still all have some and value them.

The way time banking works is that the people participating in the network have the ability to offer and request help.

Ideally, this help is accomplished without financial cost but instead through some form of knowledge exchange or simple conversation.

In more traditional time banks, the services are often performed at a person’s house or at an event, but for Hours Well spent the initial space will be virtual.

The person who makes the request is debited the time spent helping them, and the person who helped them is credited that same amount of time. (If John helps Sue for one hour, John earned an hour from the time bank and Sue owes an hour).

The goal is to create a virtuous cycle of folks paying it forward by helping other disabled folks during their times of need (or self-improvement) and rebuilding their own self-efficacy in the process.

In the meantime, each participant spends that earned time getting the help they need to move forward in their life.

Allocating energy toward your purpose

I’m a really big believer in the concept of purpose.

I believe everybody has something that they truly deeply want to achieve, though I don’t believe that it needs to be related to employment.

For some people, work gives them a sense of purpose; others find their purpose in their families or in spreading awareness of their particular cause or belief.

There are many ways to find purpose and to achieve a sense of fulfillment.

picture of the sidewalk , with feet visible.  Writing on the sidewalk reads 'passion led us here'
Think about what sparks your passion—often that’s your purpose.

I want to help and encourage all members of the disabled community toward finding what gives them a sense of purpose and reaching their goals!

I’m hoping that Hour Well Spent will help people set and achieve goals and get the support they need from other disabled folks.

Many of us are less sure of what our purpose is, or have our plans completely disrupted by our conditions.

I want Hours Well Spent to be a space for each of us to explore what makes us happy while asking for the help we need, connecting with one another, and being both students of life and educators on the topics we are experts in.

Educating one another

Disabled folks are the experts of our own bodies and have learned the best methods of managing our conditions.

In Hours Well Spent, newly diagnosed folks or folks who develop new symptoms can be educated by folks who have been managing those symptoms long term and found a useful solution.

We also individually have expertise gathered prior to becoming disabled or that we’ve picked up independently while managing our conditions.

man in harness climbs an indoor rock wall.  He is missing  his left leg.
Who better to learn from than somebody who has had a similar experience?

If you cared enough to master the topic or develop knowledge in it, likely somebody else cares about that topic as well.

Offer your expertise in any topic you find interesting and share it out to others who may want to learn from you.

We have also learned about the medical care system, the social welfare system, and other groups or systems that make life challenging—helping one another find the right doctor, care, or program can be incredibly empowering.

We have the knowledge, skills, and desires—now let’s make it easy to share.

My saving grace: somebody to help me make it happen!

So Hours Well Spent is a concept I’ve been thinking through and occasionally working on since 2012!

Yeah, it’s been in my head a long time.

When I was initially thinking about it, I was more focused on it as a geographic community tool like a typical time bank.

However, with advances in technology and deeper understanding of our community’s needs, I want to focus on it as initially and primarily a tool to connect with one another digitally, meaning that we can participate from anywhere.

My hope is that as participation grows and people move up within the reputation system, there will eventually be in-person options as well—but I really want to be harnessing our power with minimal energy costs (let’s save spoons!).

So I came up with the name Hours Well Spent a year and a half ago, and found a programmer who helped me nail down some details—but I realized that he wasn’t the right person for me to work with.

two women shake hands across a table.
It’s so nice to be creating a new partnership to help make this dream come true!

Things stalled again (especially when my migraine kicked in) and Hours Well Spent was put on the back burner again.

In December, I met another disabled entrepreneur, who has put together a team to help folks develop and build out their business.

When I told her about the Hours Well Spent concept, she loved it and wants to help me make it a reality!

She is a programmer, and has a variety of other subject matter experts who likely can help really give Hours Well Spent a huge leg up.

I’m really excited to be working with her—and hopefully we’ll have more to share as things shift from the current tentative partnership into a firmer reality.

Her excitement has reignited my energy in the subject and has made me want to share it with all of you!

What do you think? What more would you like to know?

I’d love to hear your thoughts—would you want to participate? What might you ask for? What would you want to offer?

I’m picturing video-chat sessions for helping one another and pairing up people based on skills to needs.

My big differentiator from standard time banks is that I’m developing a robust reputation system so that every single interaction leads to you getting more useful information on what you’re doing well and where more work may be needed—and it allows you to give similar feedback to your exchange partner.

Also, over time, successful interactions lead to opportunities to interact in ways that are more trust-intensive and may involve sharing more personal information or giving advice on more intimate topics.

What do you think is important?

What features or details would you like to see?

Please let me know in the comments!

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5 Comments

  1. I’m so glad that you have met a partner that can help you in the creation of this wonderful concept. I had never heard of time banking. I guess I have in the past participated in co-ops (in person) which is a similar idea. I love that this could be done virtually. We’ve spoken about it and your plans are so well thought out. I definitely would love to participate and spread the word. I love the name, too. TIME WELL SPENT!

    Keep doing the great work, Alison. This is a worthy adventure for sure!

    1. Katie, thanks so much! I’m going through a little anxiety because there are these long pauses in communication, but she’s so excited when she speaks with me I really think and hope that it’ll work out!
      I’m so excited to finally be making this happen. I do like the idea of time banks and time banking so much, but keep thinking about the extra barriers that we as disabled folks face, so I want to be sure that I create a space that has a few more safety features and feedback opportunities than the typical time bank.
      I’m so glad you’re excited and ready to spread the word- I can’t wait to have a prototype to share 🙂

    1. Carrie,
      Thank you so much! I’m really excited about it and hoping it works out. In the meantime I’ll keep going along on the blog, and hope I’ll have more good news to share later!

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