Sam

Why I Will No Longer Apologize For Making You Uncomfortable About Addiction

*Author’s Note* This is a post in response to the social media backlash I received after posting my now deleted post “The Magician The Addict: An Open Letter To Those Enabling Addicts Everywhere” 

To those I previously offended, outraged or embarrassed with my previous post, I’m not really all that sorry.  Instead while I take the time to write this post more are dying from opiates and even more are in denial about either their use or the fact a love one is using.

Last time I checked this is 2017 long gone is the era of sweeping bad things that happen to us under the rug and ignoring them much like an unattended pot until it boils over. By sweeping so called “family business” under the rug to never be spoken about until it’s far too late these people are being even more enabling to the addicts they love. Shovel more dirt on the grave.

I was berated and criticized for my opinions and voicing them publicly as if  the facts weren’t talked about they’d go away. Opening up a discussion about topics such as these is crucial and I’m not sorry if you’re uncomfortable, that’s your prerogative don’t shove your insecurities down my throat. I was told to “remember all the times those who I love with addiction helped me” and I do remember those times so it is with nothing but love for those I love that I try to help. But there were also the not so good times and those have a more lasting impact. Ignoring the problem and shutting those down who try to bring them to light is no better than pushing the plunger down on the needle, giving them a straw, a spoon whatever it may be.

We can not ignore problems that make us uncomfortable. Instead of enabling we must help. But often times we are ready to help sooner than they are ready to receive, so we can only offer rides to meetings, prayer, a friendly ear until then. But denial helps no one one.

Dear Society: Stop Romanticizing Being Wheelchair Bound

Dear Society,

When you put us in your tv shows and movies do you realize how disgustingly inaccurate you’re being?  We as a minority are all too often subjected to being either a sidekick, a background character or the best yet a vehicle for drama. Even when a character is wheelchair bound it is often downplayed severely.

I want a character that has a one on one aid, I want a character that has to rely on a staff person. Why is there no one like me in the media? Why didn’t it take the character in “Forrest Gump”  Lt Dan YEARS to get his new legs? What insurance plan does he have, because I want it? Since in the real world it takes at least a year, maybe two to get any sort of medical equipment; and that’s AFTER the 5 year waiting period before the process for a new wheelchair can even start.

I’d love to see a single father take care of his teenaged disabled daughter, like mine had to do for years. Show him dreading the bra shopping, the visits from “Aunt Flo” and the mood swings.

Why do these media portrayed wheelchair users have it so easy? Why does no one mention constipation, pressure sores or the fact everything HURTS if it rains. They don’t talk about it because it’s too real. They’d rather us sing “Proud Mary” in wheelchairs, have Stephen Hawking like intelligence, make light of situations or not exist at all.

People with disabilities are the world’s largest minority and the most under and inaccurately represented group in the media. Something’s gotta give.

Sincerely,

A real wheelchair user

 

5 Things To Know About Dating A Wheelchair User

  1. No, my significant other isn’t in a wheelchair

Most people assume that wheelchair users and otherwise disabled people exclusively date other disabled people. And while this assumption can be true for some of the disabled community there is no “one size fits all” concept, much like typical relationships. Assuming that people with a disability only date other people with a disability is the same as if I were to assume an average able-bodied tall person only dated other tall people. We all have our own preferences just as a typical person does.

For example, I am a wheelchair user with cerebral palsy. My boyfriend has a slight, barely noticeable mental disability but is otherwise able bodied.

2. There’s not really any privacy

Speaking largely from experience about this; there is very little privacy in relationships such as mine. Now some may ask why this is, and the answer is simple: I need help. When it boils down to it, I can’t take care of myself by myself. What that means for my romantic relationship is that my boyfriend must be comfortable with the omnipresent “other person” when we’re out in public because I like dry pants and being able to go to and from places. I don’t drive obviously and yes even need help using the bathroom.

In addition to in public there isn’t much privacy in our home lives either. My boyfriend and I both live in homes run by a private organization that serves the disabled. So basically, there are staff everywhere 24-7 . Add to this the fact he lives an hour away so more often than not I see him at events hosted by one of the houses in the agency, usually mine. So again staff everywhere.

3. Technology is a Godsend

Being that my boyfriend live so far from me things like FaceTime or phone calls suffice as our means of communication. We don’t often text as he has difficulty reading. It is with the help of technology that my boyfriend and I kept in touch in the early stages of our relationship often utilizing the Facebook messenger video chat feature because he wasn’t always #TeamIphone.

Speaking of Iphones thanks to the ability to FaceTime my boyfriend has attended albeit briefly things like family Christmas and “met” the majority of my siblings. Although things like phones and videochat are no substitute for physically being in the others presence, they help.

4. Sex can happen

Although in my case it has yet to happen sex can happen in relationships involving those with disability. Much like who we date, if we decide to date at all our intimate relationships are much the same. It all varies on preference and ability. Rest assured though that contrary to popular belief not all disabled people are asexual. Some might be but not all.

5. We want the same things average people want

People are people whether we are disabled, able-bodied, white, black, blue or purple. So that being said disabled individuals want the same things as our able-bodied counterparts.; to be happy with those we love.

Being 21 with baby fever and a crippling fear of having kids 

My biological clock has never ticked rather it has rung loudly with flashing lights and sirens. I’ve had baby fever since the first drop of blood at 12 I’ve longed for children my womb may never hold. Then there is the creeping thought that lives in the back of my head that if I bare children will they come out disabled like me. And the burden of a disability is one I wouldn’t wish upon my worst enemy. 
Medically my diagnosis of Cerebral Palsy isn’t hereditary as the condition is often caused by complications at birth. Yet I still fear somehow I’ll birth a child that  along with a plecenta it will be born into a wheelchair. 

When my niece and nephew (pictured above now 3 and a half) were born I was scared that one of the twins would somehow have some kind of disability. I recall asking my older brother what he would do if one of his babies turned out different. His response was to love them as he loved me. Thankfully my worries were for naught as both twins are beautiful funny people. 

Although I’m fine playing the role of “cool auntie ” my baby fever gets worse as more and more of my classmates and peers have children.  Seeing their social medias full of cherubic little faces makes me kinda sad. The “equipment ” so to speak but it’s the process itself that causes issue. So much love in a body unwilling to share. 

Dating Different Disabilities

If someone had asked me nearly four months ago if I could see myself in a romantic relationship any time soon, I would’ve laughed . I probably would’ve claimed something about “why would I need a boyfriend when I have a subscription to Netflix ” and changed the topic. Then I met Rich, and everything kind of changed. I’m not saying that a guy ‘completed’ me but it was nice to finally connect with someone on an intellectual level.

Ten months ago, seven months before I met my now boyfriend; I moved into a group home situation for people with disabilities. In the case of this house  it’s mainly intended for the medically frail and the aging, the only of its kind within the agency it’s overseen by. This unique living situation often raises questions as to why I, a  twenty-one year old who despite a diagnoses of Cerebral Palsy is relatively healthy lives in a home for the medically frail. The short answer being it’s the only group home  for people with disabilities in the area that had an open bed AND was equipped to deal with someone in a wheelchair.

Despite the vast majority of my housemates being nonverbal I’ve found my place here and am currently the happiest I’ve been since probably childhood. But things got even better in early October of 2016; based on a suggestion I’d made on a whim the management of my house agreed to take myself, a few of my higher functioning housemates on a trip to Salem, MA along with a few other individuals from an all male house within the same agency. That’s where and when I met Rich for the first time.

It wasn’t love at first sight for me at all. Yes I thought he seemed like a nice guy (I mostly just thought his tattoos were cool) but Rich wasn’t what I had envisioned the ideal boyfriend to be. Since I’m disabled but was raised around ‘average’ people having two perfectly able brothers and gone to mainstream school; never once had it ever occurred to me to really befriend let alone date someone with any kind of disability. As I just don’t see myself as largely disabled even though I know I am; briefly in high school I had gone out with a guy with a mild intellectual impairment and was quickly bored thus ending the one relationship I’d been involved in prior to Rich.

Even now I don’t view him or as as extremely disabled he has a TBI from being hit by a car as a toddler and the only real difference from Rich to a “normal” guy is that there’s some psychological stuff which he’s medicated for and some minor memory issues which are barely noticeable. We bonded on the bus ride to Salem that day, he bought me snacks and we swapped numbers I don’t think that there’s been a day since that day in October that we haven’t spoken. Although we don’t physically see each other in person but maybe once a month due to his work schedule and living a half hour away from each other, we make it work. Never in a million years would I have ever thought that dating a guy with the memory of Dory from “Finding Nemo” would be this great but he’s the legs and I’m the brain it works really well. I really should’ve taken a page from my own book and realized that disability doesn’t define a person.Moral of the story being happiness happens unexpectedly.