A woman sitting in a wheelchair is reaching hesitantly toward an offered sum of cash. Shes looking over her should nervously at three faceless government figures, behind them is a governmental building. Female, young adult, finances, independence, stress, money, job, employment, health insurance, motorized wheelchair

Becoming Financially Independent

The other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job. I wanted to make sure that I would still have my benefits and money as well as what the limit would be for how much I can make before everything gets taken away. It was very emotional.

Too much information to process

When we (my mom and I, as she's my only caregiver) went in, I blacked out from what the woman said. I blacked out because this whole process is scary and unknown - what can I do? What can't I do? It didn't help that woman helping us spoke in general terms, and that frustrated me.

More questions than answers

I just wanted straight answers. I rolled out of there with more questions than answers. I'm grateful that I was able to get some help from them, but I also had to text some friends to see what the limit of money I can make and have to still be able to have SSI and Medicaid.

I try, keyword try to prep for all scenarios and possibilities. I was nervous that without a straight answer, I would be unable to pay my bills. I didn't know if they would tell me if my money would just be taken away or if I would get a notice from them stating that I would not be receiving SSI just because I now have a job. I never got those questions answered.

Trying to be independent with a disability

Is that realistic? Maybe, maybe not. Maybe I'm driving myself crazy for a big what if? But as someone who is trying to be independent as much as possible as a disabled person, with spinal muscular atrophy, I try to plan for everything. I'm really trying to let things go and let it be whatever it will be.

However, I struggle with control because I don't have control over most things, but I'm working on that. I know that everything works out, but doesn't mean that I can't feel however I feel about it, especially in the moment.

Now that I've been able to cry and feel my feelings, (which is very important no matter what negative thing your brain or society says!) I feel better about things. I'm definitely tired of all the hoops we have to go through just to live our lives, and I will never get why we can only have $2,000 in our account overall.

Why the limits on income for people with disabilities

I'm so grateful and thankful for the money I have and can make, but, why is there a limit? I wanna be able to plan ahead, live my life, get a great career, why is there a cap on this? It's 2023, there's absolutely no reason for this. Disabled people are so incredible. We are smart, valuable, loved, important, planners, independent (mostly) and game changers.

Maybe the perception of disabled people was different a long time ago, but we are so powerful and not these negative perceptions that are so old school. I'm ready to make change and am working on ways to do so, but in the meantime, remember however you feel is okay especially in a world that still somehow doesn't celebrate our differences.

Community Poll

Do you rely on government programs like SSI to supplement your income?

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our SMA In America Survey yet?