THE BLOG

Love Wins! What's Next for Marriage Equality?

06/29/2015 04:03 pm ET | Updated Jun 29, 2016

Amidst the vast news coverage and social media explosion in celebrations and jubilee of the history-making decision granting marriage equality for same-sex couples, a victory well-over due, I was reminded as I scrolled through my Facebook feed this Saturday afternoon that there is still work to be done to provide marriage equality to absolutely every person in love longing to tie the knot.

As happy and blissful as I am to finally in my lifetime share in celebrating this event, the fight must continue. As a Disability Equality Advocate, a woman and mother with FSHD Muscular Dystrophy, dependent on our social services such as SSI/SSD and Medicaid/Medicare to survive and provide for my daughter, whom also has FSHD, and newly engaged this year, marriage for me and my partner, as well as the millions of other individuals with disabilities, marriage isn't just about saying "I do" to the one you want to share your life with, it's risky, and if I were to become married in the eyes of the law, myself and my family may just lose everything we have.

And as if it wasn't hard enough to overcome the personal obstacles of a disability just to function and to be included in society, those with disabilities have to also overcome the stigma and discrimination within our everyday life just to find equal public accessibility, education, housing, medical care and equipment, and employment, just to attempt a self-sufficient independent lifestyle, one that would support dating and seeking relationships. Finding love isn't easy even for the able-bodied, let alone when you have a disability, but when you are lucky enough to find "the one", love in the disability community is steeped with harsh penalties when you pursue coupling and marriage.

I read a post with a link to a petition on Change.org addressed to 152 representatives in all 50 states to remove penalties that prevent disabled persons from getting married created by Dominick Evans. And to my surprise, this petition wasn't created within the wake of the landmark same-sex marriage ruling, but 3 years ago with an aim of acquiring 20,000 signatures. Currently, there are just over 3,000.

The petition sums up the issue that I and millions of people with disabilities, who depend on services such as Social Security Disability Income and/or medical benefits from Medicaid, and how getting married or having a spouse "deemed" a part of your household can risk a person with disabilities of being reduced or even eliminated from services, otherwise forcing financial compromise onto an individual with disabilities and their desire to have a family.

Currently, according to the Social Security Handbook, which can be found on their website at www.socialsecurity.gov, when a person with disabilities is eligible for payments from SSD/SSI, you may be subject to "deeming", an evaluation they run when you share a household with others. The following is straight from the website:

2167.1 What Is Deeming?

When we determine the eligibility and amount of payment for an SSI recipient, we consider the income and resources of people responsible for the recipient's welfare. This concept is called "deeming." It is based on the idea that those who have a responsibility for one another share their income and resources. It does not matter if money is actually provided to an eligible individual for deeming to apply.

2167.2 In What Situations Are Income And Resources Deemed?

There are four types of situations where income and resources are deemed:

From an ineligible spouse to an eligible individual (see §2168);
From a parent to a child under age 18 (see §2169);
From a sponsor to an alien (see §2170); and
From an essential person to an eligible qualified individual (see §2171).

2168.1 How Are Income And Resources Deemed From An Ineligible Spouse To An Eligible Individual?

When an eligible individual lives in the same household with an ineligible spouse, the income and resources of the ineligible spouse are deemed available to the eligible individual. If there are ineligible children under age 22 (who are students) in the household, an allocation for their living allowance is provided. A living allowance is also provided for the ineligible spouse.

2168.2 When Does Deeming NOT Apply?

Deeming does not apply when the eligible individual is not in the same household as the ineligible spouse unless:

The absence is temporary; or
The ineligible spouse is absent from the household due only to a duty assignment as a member of the armed forces on active duty.

2168.3 What Income Is Excluded?

Certain types of income are excluded when determining the income to be deemed from the ineligible spouse. They are listed in §2167.3. Also, there are additional exclusions provided based on whether the ineligible spouse receives earned or unearned income."

Set in 1989 and enforced today, aside from any exclusions to resources not considered, statutory resource limits for a single individual to qualify for SSI payments is only $2000, and when you have a spouse, that limit only increases to $3000. That isn't a lot when this limit is the sum of all of your worldly possessions, that is if you were to turn around and sell off absolutely everything you own, not just money saved. Your vehicle, computer, your iPad or tablet, or vintage toy collections, nothing of value is off limits if it can be sold for a monetary value. Plus it doesn't allow any exceptions for any savings to pay for a wedding.

As President Obama declared in his speech broadcast on CNN announcing the legalization of same-sex marriage, "All Americans are entitled to equal protection of the law, that all people should be treated equally, regardless of who they are, or who they love... if we are truly created equal, than truly the love we commit to one another must be equal as well." I call to you President Obama to uphold those words regarding people with disabilities and to truly reform our systems, to actually support and promote equal civil rights and access to needed services like SSI/SSD and Medicaid/Medicare and to allow for the possibility to marry for people living with disabilities, so that we too can dream of creating a family without fear of losing these life dependent services or being forced to chose one over the other.

Abolish the rules that violate our civil rights preventing people with disabilities from inclusion in our society and equal access to partake just as freely as anyone else in marital bliss without fear of such severe penalties for simply having the miraculous and blessed fortune of finding a committed love in such a harsh society.

I call out to everyone to support this cause, you can join the Facebook page Marriage Equality for People with Disabilities, and to sign the petition. For there to be true marriage equality, you must to include people with disabilities.