Imagine a world where beauty is seen within instead of on the outside; where we focus on individual skills, personal strengths, and we praise unique qualities and abilities. As human beings, in every part of the world, we are different yet beautiful in a multitude of ways.


Fifteen percent of the world’s population live with some type of disability. There are many different services that those with an intellectual or developmental disability require to have their needs met and be able to lead fulfilling lives. This varies from assistance in education to healthcare, transportation to housing, and beyond. But having a disability and needing assistance doesn’t make us any less wonderful or any less deserving.


The barrier that can be the most difficult, especially from my experience as someone with a documented developmental disability, is Social Security. The form of Social Security I receive is Supplemental Security Income (SSI). As a mother of a child who also has a disability and a newly married individual, I am concerned about what Social Security is going to take away from me. There is a marriage penalty with SSI that reduces my monthly check. It almost feels as if I am being penalized for having a disability and wanting to get married and share my life with the person I love. My husband makes some money, but not enough to pay all our bills, especially with recent inflation in rent and cost of living skyrocketing too: groceries, gas, childcare, etc.


I am astounded how the government has not updated their policies regarding benefit eligibility, and how SSI has not increased with the cost of inflation, considering how expensive is to survive in 2022.


Due to being married, I recently lost my food benefits, which sadly did not surprise me. However, it still hit me and my family hard. My husband had a rough week at work and was not able to flag extra hours to make up for the needed benefit that ended.


The big question:
If my husband did not lose his income for getting married, why did I?


A lot has changed in the last two years for everyone, but especially for those with disabilities. A lot of the services we relied on were closed throughout the pandemic, and some of them are just now reopening to the public. Worker shortages due to the pandemic caused rising costs of everything, including the basics to survive, which puts financial hardship on families and individuals with disabilities. I feel the anxiety and worry about how we are going to make ends meet.


I am sure many other self-advocates and their families are wondering why the government continues to not update SSI amounts, especially when many don’t know how they are going to even afford rent. Social Security doesn’t pay enough to assist with bills as is, so you either need to live with family, find low-income housing (which has long waitlists), get a job (which depending on the level of your disability can be extremely difficult, and you can only work limited hours to ensure you still get some SSI or Medicaid benefit), or get married (and know your small amount of SSI will be reduced to even less).


The Advocacy & Family Support team at The Arc is doing their absolute best to advocate for changes so that in the future, no one, especially someone with a disability, will be forced to sacrifice love for government assistance. Our organization takes part in Advocacy Days, focusing on legislative bills that have a huge impact on those of us with disabilities. The bills are like bricks that stack on top of one another; it’s truly amazing how one bill helps build up the foundation for another bill.


As self-advocates, parents, and caregivers, it’s nice to be in this together; it truly takes everyone’s efforts to make major changes around us. Imagine a world where we didn’t have these barriers, where we felt understood and heard. Our voices are a lot more powerful than we realize.


We are in 2022 and it is time to take charge! I truly believe we, as a community, can make changes. We can change this world for the better and pave the way for future generations of those with intellectual and developmental disabilities! We can make it so that they can be their unique and beautiful selves and live fulfilling lives with their loved ones and have their essential needs met.


Taylor Crisp
Spokane Parent Coalition Advocate