But You Look Fine: The Reality of being Young & Disabled

Updated: Oct 24, 2019




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@rebeccalegon @olivia.grace.o - @charles_mduke - @travisflores - @bfit_johnson -

@samhainesy - @melanasmith85 - @beyondlupus - @drewynovaclara -@stephromer

You are finally an adult and able to live on your own.

You were born with a disability or developed one as young person.

Before we continue, let's explore the reality of what a disability really is, and looks like.

According to Merrium-Webster, the definition of the word disability is, "a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions."

For many years before our generation (adults in their 20's and 30's as of 2019), disabilities were viewed as people who were so extremely severe, physically and/or mentally, that they could not be alone, care for oneself, or live on their own.

As the overwhelming amount of people being born with and living with various illnesses as children and young adults for the first time, we are now redefining the way society looks at the word "disability" and declaring equality.

Inequality for disabled people is absolutely a Civil Rights matter. I have said for years the abuse, mistreatment, and inequality of disabled citizens is the next Civil Rights Movement.

I am happy to be a part of that and take what I can, on, to fight for those before me, after me, and in the thick of it with me today.

Why support us though? Don't we have families to do that?

You would be surprised at how many of us actually don't have much help.

Many family members are either too traumatized, embarrassed, and/or ashamed of us and cannot deal with helping us. Having the same blood doesn't take the shame away that society has embedded into people's brains, especially those of the baby boomer generation and before.

Just because we are someone's child, grandchild, sibling, niece/nephew, cousin, friend, or significant other, does NOT mean they aren't embarrassed to be with us, don't have a hard time talking to us, or being there for us.

I am determined to live long enough to experience a world where common sayings such as, "you're exaggerating," "you're being dramatic," "it's not as bad as you make it sound, you just want attention," and endless degrading, demeaning comments we hear.

The place where these comments are the most terrifying and detrimental, are by our own doctor's, nurses, and emergency room staff. Abuse in the disabled community, is very real.

*If interested feel free to learn more about what happened to me almost two years ago when an ER staff refused to believe I was having a stroke and instead decided for herself I was a heroine addict who overdosed and being dramatic. The nurse who ripped my clothes off had the shot in his hand. If they were able to hold me down, they would've shot me up with Narcan and possibly killed me.

These things happen every single day because we "look healthy" and "look too young to be sick." Well, thinking like that instead of facing reality and accepting there are millions of young people with life threatening and severe illnesses, can kill someone.

Many of us feel and are alone in the world with not enough people fighting for us. Yet, now with the internet, we can be alone together and virtually fight as much as we can. But, we still need your help.

Don't worry this isn't when I ask for money, or anything of the sort.

This is where I ask you to keep reading.

Receiving financial assistance from the government for a disability due to the inability to physically and/or mentally work full time, is knows as SSDI. Unfortunately, this is often associated with deep shame, embarrassment, fear, and an overwhelming amount of anxiety and depression due to society directly and indirectly spewing their hatred and ignorant opinions. And they don't stop at verbal opinions. There is of course now heavy amounts of cyber bullying in addition to the looks, signs on our cars and houses, the avoiding eye contact or saying hello, the keeping their children away from us, etc.

All stemming from not fitting into what many think someone should look, sound, and be like as a person to be "disabled," and worthy of receiving SSDI.

Because of this, you would be surprised at the overwhelming number of disabled people who refuse to actually be on SSDI. Some would rather be sick, unable to work, and live at home depressed for the rest of their lives, or yes, even DIE, than be on disability. I personally know a few people off the top of my head who have passed away and refused to ever be on disability, which could've helped them get better healthcare (if they had any at all) and mental relief.

However, our pride, the deep shame, and the control the government puts on a disabled person's life is terrifying to many. Due to a disabled person refusing to get the help they deserve and be on SSDI, or being on SSDI, both result in the same outcome; Living in poverty. Please see links below.

Due to our limited living options, for some, it's important to either stay close to family, be close to your doctors, and favorite hospital. In addition, many young disabled people need nurses or a caregiver.

Young disabled people often live very simple, quiet lives.

What kind of life does that sound like?

The life of a senior citizen.

Those like myself, born with a disability, and those who have developed disabilities at young ages, are either completely unable to work or can only work part time. Many are either on disability or depend on their families or a significant other to help pay for their lives. The median cost for a rental in the United States is $1050 as of 2016 without utilities included! And can be up to $3,000+ per month for a place that is wheelchair accessible and friendly. That doesn't include other costs of living either such as eating, transportation, insurance, clothes, or entertainment and paying for any other very simple things everyone deserves to enjoy.

Although it ranges based on where you live, majority of single individuals who are on disability receive $700 per month. For food stamps it ranges from $16 to, if you're lucky, up to $100 per month for one single person.

With those food stamps though you cannot pay for anything for your pet, use it as cash, cannot use it for laundry detergent, toilet paper, or literally anything but food. Some even restrict things like tea. Furthermore, we are restricted from owning assets or even being allowed to save up a significant amount of money without risking losing benefits. This is a roadblock to owning a home.

What options does that leave Independent Disabled Citizens? Lets explore this.

Senior citizens have thousands of Senior Citizen (55+) and Independent Living Facilities and safe gated communities (55+) that were built to keep them safe and understand they are often on a fixed income, need in home care, and built to facilitate their simple quiet lives. As they, of course, deserve! These amazing heroes have raised families, built companies, created the world we are now living in, and have exhausted their blood, sweat, and tears to fight for the rights and easy living conditions we have now. Not to say we don't have a lot of work to do still in the world, however, they got us where we are today. They absolutely deserve peaceful, safe, beautiful communities!

..... And so do Disabled Citizens.

To no fault of our own we have bodies that are not strong enough to allow us to work enough to afford a nice apartment or home. We must be creative with how we live to be safe. However, the creativity runs dry when we face constant dead ends, discrimination because we "look young and healthy," and are not "old or 55 and up." Maybe we aren't poor enough to get on a "low income" housing list or don't make enough to afford homes our peers afford working full-time careers.

I have personally assisted friends and people I have worked for in finding a place they can live on a Disability income. I have watched parents cry and be terrified because they don't have a place for their adult children to live that is safe and affordable.

Many of them who ended up in Senior Facilities were turned down by several before getting accepted. It was so sad and just plain horrible the hell disabled individuals and their families had to go through to fight to get them into these places.

Why not live in Low Income places, you may ask?

Unfortunately many "affordable and low income" places the government wants disabled people to live in are NOT safe, especially for a disabled person living alone. I have personally lived in many a low income apartment complex. The drug dealers, drug addicts, criminal activity, and prostitution that goes on in many of these places, is not somewhere you want your young disabled child or loved one to live. Especially because we are the first to be preyed upon since they/we are looked at as weak, easy, and fragile.

If I created a petition that screamed "HELP THE DISABLED COMMUNITY FIND SAFE, AFFORDABLE HOUSING!" Then what would it actually do?

I have created a petition before and in the end I thought, "what was the point of that if no one in power will actually help us?"

If I could, my dream years ago was to build my own disabled living community. However, that still wouldn't fix the entire world, but it would help one tiny community and that is where change begins. I am not giving up on the dream but for now it is not financially attainable.

Until then, all I can do is write a blog. Talk about it as an advocate and amongst friends. And hope more awareness one day we will effortlessly be accepted into Senior Communities, or have our own.

We, the disabled people, deserve safe and affordable communities too.

How do you think we can find a solution?

Today, it all begins with sharing to raise awareness.

What will sharing do? Why raise awareness?

You never know who may read this, who may be inspired to truly create change, who has the means to do so.

I spoke with many people from all walks of life while doing research for this blog. One man spoke passionately about the other world he saw when opened up to how the disabled are treated in America.

"I suggest talking about the ultimate issue here... that disability simply doesn't pay enough to live a dignified life. It's especially infuriating when you realize there are those in power actively trying to take rights and benefits away from this community of people, in a time when the top 1% are making record profits and getting away with paying employees wages that leave them in poverty. This is equivalent to corporate welfare. Tax payer money has to pay benefits to people who work full-time because they simply aren't paid enough. The divide between the "have's" and the "have not's" grows from year to year and this affects the disabled community harder than most others. It would be amazing to have some corporate accountability and place the responsibility directly where it belongs, however current legislation disproportionately benefits the rich while simultaneously attempting to cut medical, financial, and educational benefits from this country's most vulnerable populations."

Learn More (and SHARE!) about the Disability Housing Crisis:

-Nowhere to Go: The Housing Crisis Facing Americans With Disabilities

-Less than 1% of U.S. Housing is Wheelchair Accessible

-Tough Choices: People with Disabilities Face Housing Crisis

-Priced Out: The Housing Crisis For People With Disabilities

-Report: Housing A ‘Crisis’ For People With Disabilities

-People with Disabilities Face Significant Affordability Challenges in the Rental Market

If this post resonates with you and you are an adult living with a disability, you are welcome to submit your story on CHD Legacy to be featured this year! Please inquire @ Stephanie@CHDLegacy.com.

Stories create awareness.

Awareness creates change.

Change saves lives!


*Check out my latest blog: Bullying Kills - Re: seriousness and reality of being bullied with a disability.



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