Do You Have Work Experience?

[blake-watson]

I’ve mentioned this several times on the forum but this is an issue I’m passionate about. I think there are more opportunities than ever before for people with SMA (and other disabilities) to work—even though there are a lot of barriers, as you mentioned, and many of them unnecessary.

I discovered computer programming and web development in college. I graduated in 2009 with a graduate degree. Then I spent 6 years trying to drum up freelance work and hunting for a full time web dev job.

It was very difficult and I regrettably cried myself to sleep some nights, thinking I’d never get a job (in hindsight I shouldn’t have been hard on myself). But in 2015 someone gave me a shot and now I’ve been doing web development full-time, professionally for 7 years.

Currently I have a remote role with MRI Technologies, working on apps for NASA. I’m a space nerd so this is a dream job for me.

Before that I worked at an ad agency, doing web design and development for businesses.

Over the years, I’ve developed a love for good design and typography that has really stuck with me (and hopefully one day I’ll be decent at it lol). But it’s the act of creating something from nothing and immediately publishing it to the world that sucked me into this field. I was doing it before I was being paid to do it, and I’ll be doing it long after. As one developer put it, “This is my garden, and I intend to putter.”

I hope that legislation will come through to ease some of the stringent rules and limits and allow people with disabilities to work without fear of losing their healthcare and caregivers. I think the explosion of remote jobs is a great opportunity for people with disabilities to work, so long as they are not forced to choose between working and living.

[alyssa-silva]

So glad you found your dream job, Blake. Thank you for sharing that with us!

[deann-r]

Sounds like a fascinating career path. Have to admit, a little jealous as my childhood dream was to be a NASA astronaut. Mainly because of the zero gravity thing, but still even developing apps for them sounds cool.

Navigating “the system” can be such a headache to balance. Do you have any tips in that regard?

[blake-watson]

I want to go to space so bad! Would love to experience weightlessness, but also I feel like being able to see earth from that perspective would be a transformative experience.

When it comes to navigating the system, it’s difficult because the system is different depending on where you live. But generally I have this (not official legal) advice for US peeps:

• You can work while being on SSI, even if you make too much money. You might not receive a cash payment, but you can retain your eligibility for Medicaid under a rule called 1619b. So long as your medical expenditures (including caregivers) is more than you can afford to pay on your own, you can remain on SSI.
• You can fairly easily create an ABLE account. It’s like a savings/investment account that SSA won’t count against you (up to $100k). It’s true you’re only allowed to use that money for “qualified disability expenses,” but just about anything can meet that definition if it helps your quality of life or helps for school or work (eg, new computer, probably even a new TV, anything related to assistive tech, etc).
• If you ever get a letter stating you’re about to lose benefits, appeal the decision. You’ll be able to keep benefits until the outcome of the appeal. There is a National Disability Rights Network. There’s probably one in your state (search “disability rights YOUR STATE”). They provide free legal assistance and can help you with access to public benefits (including helping appeal a decision).
• Try not to worry about it too much. Sometimes you’re forced to deal with the system but you also have to live your life.

[deann-r]

Great suggestions. Especially the last one. It’s so easy to become overwhelmed and stressed about this kind of thing.

I say I would jump on a shuttle in a heartbeat, but when it comes down to it who knows. It must be a profound experience though. It was fun seeing William Shatner’s reaction to going up. He was pretty emotional about it.

[eric-ovelgone]

So…nothing gets me angrier then the way the current system handles employment of people with disabilities. Ironically , my very first job out of college was working as an administrative assistant for Maryland’s departments of employment of people with disabilities. That terrible experience has long shaded my opinions and sadly my hopelessness that any positive changes will occur in my lifetime .

There is this weird dichotomy between programs to assist the disabled to work verses the basic needs one needs to live. Virtually every government program proudly proclaims they are designed to help disabled return to the workforce and become productive tax paying citizens . Problem is, first of all…every government , state, charity program begins their help that begins after enter door of employer. Need training? No problem! Fancy overpriced technological gizmo…sure…have two. Oh…you need reliable attendant care to get you up, washed, dressed and fed in a timely manner to get to work? Sorry…that is only available if you are unemployed and financially destitute . If you apply a few years ahead, pay a substantial portion of income to attendant care and go through a few thousand legal hoops …there might be a program to help a little. Reliable transportation? Wouldn’t you rather work from home? Don’t earn too much though , inherit anything or have more than two thousand dollars in assets you will loose all your assistance and probably medical insurance too. But if you work, this program will pay for an electric stapler.

It is idiotic to talk about employment of people with disabilities if employment means loosing access to all the programs that cover basic fundamental human needs. All the programs, committees , forums for employment of people with disabilities are purely for political show. I still recall how DORS, the premier job training site for people with disabilities would put on a great show for the politicians and media. They would show classrooms of students on computers doing cad, a meeting area with things for students to do between classes…even a little shop. Second politicians left, students were left fighting over ancient computers so old they were obsolete before i was born, most of building closed up and lights out. Students couldn’t even visit one another as it was deemed a fire hazard. Classes were geared to drug addicts…cheaper and easier to help and legally classified as disabled . That 19 percent is an over-count and includes people with minor back problems, carpel-tunnel and minor disabilities .

[blake-watson]

I feel this. It really is discouraging. I think I’m currently within the rules thanks to the SSA Individualized Threshold and an ABLE account (you can put $100k in here before SSA cares about it), but I never know for sure and SSA employees often have no idea what I’m talking about when I mention it. I have a perpetual, existential dread about receiving a mundane piece of mail from the SSA that will ruin everything I’ve worked for.

[deann-r]

“Existential dread” exactly!

[alyssa-silva]

Ugh, you’re absolutely right, Eric. It’s such a damn shame.

[tammy]

I do have work experience, but not the type of job that I would call a career. Which I would like to have. They are just job jobs. My first job was a camp counselor at a day camp. Then after that my senior year of high school I started working at a grocery store a few towns away because my best friend worked there and she thought it would be fun for us to work together. Here I am now at 41 years old and I still work there lol, although it’s not the same store anymore. Different owners, different store. It’s a paycheck and I look at it that way. But it certainly not something I wanted to do forever.

[alyssa-silva]

Yes, a paycheck’s a paycheck! Thank you for sharing your work experience. 🙂

[deann-r]

You’re not alone Tammy. Before I had this gig I had a job just because it was something I could do, not because I loved it. It’s kind of what makes the world go round though. What is your dream job?

[tammy]

I would love to do something with animals. Also have had a lot of interest in dna/crime scene analysis type of stuff. Even though it sounds morbid an creepy. It just stinks because you go on interviews and everybody’s always super nice to your face and then you just never get a call back lol. Only places that ever seem to hire me are grocery stores. My current one isn’t the only one I’ve worked for. I used to work for two different ones at the same time. Because I have front end and customer service experience. They always seem to like me. But I just wish I had a job I could be proud of lol. But oh well I guess it’s better than nothing. And I really do love my coworkers. Well most of them lol. There’s a lot of us who have been there for a really long time. And we are all pretty close

[deann-r]

Working with animals would be fun. I hear ya on the whole job process. None of my jobs I got the conventional way. Have you thought about volunteering at an animal shelter? Sometimes volunteer positions can lead to job opportunities. If you don’t get a job out of it, it would still give you your furball fix.

[tammy]

Yeah I would love to but unfortunately finding a ride there and back is always an issue. And then when I do have people with me I’m always so jam-packed with trying to get everything done before they leave that it’s like I never have enough time for anything else. So frustrating