Marriage Equality…For Everyone?

Beth and Frank are deeply in love. They have been in a committed, exclusive relationship for nearly 20 years. They have a wide circle of friends and a wide variety of shared interests. They take pride in each other, encourage and support each other. Their extended families are connected. Their’s is a deep, complex, nuanced, long-term relationship that gives them both great satisfaction. Beth told me once that her greatest dream for her life is that someday, she and Frank can get married. But they can’t get married, nor can they live together outside of wedlock. Beth and Frank aren’t real but their story is true for dozens of couples I know. bill-and-shelley-wedding-photo When the Supreme Court made its historic ruling on same-sex marriage, I celebrated. But then I remembered all those couples I know who are still denied the opportunity to marry and decided the battle for marriage equality is not over yet. And it won’t be over until all the Beths and Franks that I know – and the millions of Americans like them – are afforded the same chance to marry that you and I are. The reason they can’t get married has nothing to do with love or religion or morality and everything to do with money.

Their relationships face the same derision and marginalization that same-sex unions have been subjected to for so long. Then, these relationships are further devalued and disrespected because should these couples decide to marry, they could be subjected to substantial financial penalties on the government benefits they receive – benefits they rely on to live as independently as possible.

As one woman said to me, “No one will let us get married because we’re special.” special-needs_539_332_c1 I’ve done some research to find out why the marriage penalty for people with disabilities even exists in the first place and, on paper, it makes sense: two married people who live together can save money on shared living expenses – rent, utilities, groceries; if those two people also happen to receive government benefits, then those benefits could be reduced because of the savings. In the case of people with intellectual or physical disabilities, each person could receive a 25% reduction in their benefits if they married. If they chose to live together outside of marriage, as soon as their living status was reported, their benefits would be cut.

We say that we want people with special needs to live as independently as possible, that we want to educate them in a “free and appropriate environment (FAPE)” and that we want them to live in the “least restrictive environment (LRE)” and yet we hamstring them at every turn. If they have jobs, they are restricted from earning more than a pittance or their benefits are jeopardized. If their families place money in their names to insure for their long-term care, their benefits can be reduced (unless the family has entrusted this task to a team of highly-skilled attorneys and accountants who set up a Special Needs Trust). If they live in a co-ed group home, they are forbidden from having relationships with the opposite sex out of fear that love might bloom, risking the benefits that pay for their housing.

Raising a child is an expensive proposition. Raising a child with special needs is exorbitantly expensive, even for families with deep pockets and the best insurance. Families rely on the assistance of a complex chain of entitlements and benefits that make it possible for their children to have the therapies, services and assistance they need to live full and rewarding lives. Explaining those benefits goes beyond the scope of this post – partly because I can’t begin to interpret them all and partly because they are so intertwined and include SSI, SSDI, Medicaid, Medicare, Welfare, Section 8, food stamps and others.

People with disabilities rely on some or all of these benefits but in order to retain them, we expect them to basically live in a state of poverty and restrict the amount of money they can earn, save or have in their name. This article from The Huffington Post includes resources and links, along with a simplified explanation of the benefits most at risk for the majority of people with disabilities, should they marry.

My purpose here is to raise awareness of the issue and to ask this question: Should people with special needs be allowed to marry, without any financial penalty?

Justice Kennedy, in writing the opinion for the majority, said of marriage that, “Its dynamic allows two people to find a life that could not be found alone, for a marriage becomes greater than just the two persons. Rising from the most basic human needs, marriage is essential to our most profound hopes and aspirations.” Justice Kennedy also wrote, “Marriage responds to the universal fear that a lonely person might call out only to find no one there. It offers the hope of companionship and understanding and assurance that while both still live there will be someone to care for the other.” couple-with-disability-wed-photo I believe that everyone who wants to be married should be afforded the right to fill that basic human need, to assuage the loneliness of living alone and to have the companionship of a partner, regardless of their IQ or physical limitations.

Granted, adults with special needs who want to get married may require additional support systems to insure their success. Most of the families that I know would be more than happy to provide those support systems to their loved ones…they just can’t afford to take the financial risk.

People may question how two people with special needs could actually live independently, in a state of marriage. A documentary, Monica and David, paints a lovely and realistic picture of marriage for two adults with Down syndrome. This touching film won numerous awards and I highly recommend it for anyone interested in the topic (it can be found here on Netflix).

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More information can be found on the Marriage Equality for People With Disabilities Facebook page. A petition is available on change.org to end the penalty that prevents people with disabilities from getting married. I signed it and I hope you will consider signing it too.

Society can debate about government subsidies and programs, healthcare expenses, the feasibility of people with special needs living independently and other details in abstract all day long. I can’t think of these things in the abstract because when I think of them, my mind immediately goes to all of the Beths and Franks that I know.

I think of adults who love each other and long to share their lives together in a legally recognized union.

I think of adults who deserve the dignity and respect that marriage would bring to their relationships.

I think of adults who deserve to have lives like the rest of us because the only difference between “them” and “us” is a few IQ points…or the way we move around…or the way we communicate.

They” are not people with disabilities…they are people, who experience the full range of human emotions that we all share.

Their” love is no less than our love.

And if #lovewins is true, then everyone’s love should win. 11722330_848694518546662_4909391832293084721_o

My Mastectomy And A Note

Tomorrow morning at 6:00 a.m., I will check into UAB hospital for a preventative double mastectomy with reconstruction, a surgery that may take as long as ten hours. I’ve been quite anxious about this, dreading the pain and the interruption to my life. Of course, I’m grateful that I can do this before my inevitable breast cancer diagnosis and know that I’m lucky the BRCA gene mutation test allowed me to take matters into my own hands. Even with the greatest news of all…my daughter did not inherit the gene mutation and will never have to go through this process, I haven’t been a lot of fun to be around the past few weeks as the tension has built.

I was diagnosed with Crohn’s disease when I was 26 and have had a fair number of surgeries because of that…intestinal resections, gall bladder removal, a hysterectomy…and then both of my children were C-sections…with 8-inch vertical incisions up my belly. When I had my ovaries removed in October, they weren’t able to get to them using a laproscope so the same incision site was opened yet again. Then there was the back surgery I had three years ago when a disc ruptured and too many procedures under anesthesia to count, along with the cosmetic breast reduction surgery that was my 50th birthday gift to myself. If only I had known four years ago what I know now. The plastic surgeon who will operate on me tomorrow said it is actually to my advantage that I’ve had breast surgery before…things were lifted back where they used to be…which increases the chance that the nipple-sparing technique he uses will be successful. But still, I’ve been shaming myself over my vanity.

I’m a surgical veteran and know the drill…the pain, the helpless loss of control, the indignity of hospital stays. Basically, I know that I’m about to have a pretty wretched couple of weeks.

I’ve done my homework, read up on the BRCA mutation and my surgical options, have had repeated consultations with the breast and plastic surgeons who will be working on me tomorrow. I’ve followed hundreds of message threads from the multiple Facebook groups for previvors I’ve been invited to join since writing about my mastectomy decision. I’ve talked to my mother and friends who have had mastectomies. About three weeks ago, I decided I had taken in all the information I could…no more because I was tired of second-guessing and what-iffing.

I have wrapped up the hot button items on my “to do” list at Merrimack Hall, have delegated everything I can think of and have to admit, for a control freak like me, it’s sort of liberating to have no option but to turn loose of things. I’ve cleaned my house, paid the bills, tried to leave everything in an orderly manner…more for my benefit than anyone else’s. I bought mastectomy bras and button-front tops with pockets to hold drainage tubes. And through all the planning and preparation, I’ve had a knot the size of Texas in the pit of my stomach and a constant feeling of dread.

On my last afternoon in the office, I made a final sweep of my desk, with my teeth clinched and my nerves frayed. Just when I thought I would come unglued if I found one more thing I had neglected to do or delegate, I found this:

Chelsea's letter

My friend, Chelsie, made this for me and attached it to the holiday goodies she and her mom had given me for Christmas. I saved it because I intended to write a post about this note, one more thing I hadn’t done. I couldn’t have found her message at a better moment in my life.

If you need a slight translation, Chelsie wrote, “Be happy. You I love. Smile. Chelsie.

The pit in my stomach lifted a little bit. And I smiled. In Chelsie’s world, all you need to do to be happy is just to…be happy. Smile. That’s all it takes.

Chelsie…the adorable one in the middle!

Chelsie…the adorable one in the middle!

Chelsie has written me lots of letters and she always ends them the same way: Debra, you I love. Now, to some people, it may seem that Chelsie has her words backwards because the rest of us would say, “I love you, Debra.” But it occurs to me that when we say “I love you” to someone, that makes it all about us…”I” feel something about you and this sentiment has everything to do with “me” and actually nothing to do with you. The way Chelsie expresses her love makes it all about the other person. Debra…you I love.

So tomorrow, I will do something I don’t want to do and I will have a rough week. But I will try to smile because Chelsie told me to. I will be happy because Chelsie said I can. I will remember that Chelsie’s love for me isn’t about HER feelings. Her love is about ME. Chelsie…you I love, too.

How bout we all take Chelsie’s advice! Facing something tough and scary? Smile! Feeling down and defeated? Decide to be happy! If Chelsie can do it, so can we.

To everyone who is thinking of me and praying for a speedy recover, I thank you. Your support has given me courage. And to Chelsie and all of my friends at Merrimack Hall…YOU I love.

 

 

What Happened When A Radio Talk Show Host Used The “R” Word On Air

This post contains graphically offensive racial and ethnic slurs that are not a part of my vocabulary…I am using them to illustrate a point. I am deeply offended by the use of words that disparage or diminish any group of people.

Words…what power they have.

The words we choose to use can open a dialogue or shut one down; they can make a friend or an enemy; they can forge a bond or create a divide.

This morning, local radio station owner Michael St. John was hosting his daily morning talk show when he unintentionally ignited a firestorm by his repeated use of the “R” word. I didn’t hear it myself but one of the parents in my program did, and she called me. She was hurt and outraged. She said, “You are our voice…please speak for us” so I called the station to see if Mr. St. John would speak with me. We talked for nearly an hour and I think both of us came away feeling positive.

On-air, Michael relayed the story of two separate events that happened to him yesterday that involved two people with special needs, one who worked in a grocery store and the other at a fast food restaurant. In both instances, the person with special needs was unable to perform the job duties they had been assigned. In both instances, everyone involved had become frustrated – the people with special needs and the customers they were tasked with serving. Michael explained to me that he was trying to ask a general question…is there some sort of governmental mandate that is requiring businesses to hire people with special needs even if they aren’t qualified for the jobs?

I should mention here that Michael’s radio station is a conservative talk station, which helped me make sense of his “big government interference” theory. I should also mention that there is no governmental mandate to hire people with special needs and that I strongly encourage businesses to give jobs to people with special needs when they can. We have two employees with special needs who make valuable contributions to our organization each day.

In both of these instances, the person with special needs had difficulty making appropriate change for a purchase. Michael wondered why they were put in the position of operating the cash register if they weren’t skilled enough to do so, which is a valid question. Personally, I think the inability of some fast food workers to make change has more to do with our failing school system and our minimum wage than it does with having special needs but that’s a political ball of worms that I don’t care to open in my blog.

People didn’t hear Michael’s question or understand his point because all they heard was his choice of words…retardedretardretarded afflictions…and his repeated use of “them” and “those people.”

When I asked him about his use of these words, he was adamant in his intention that he used these words to describe the diagnosis of the person and did not mean to cast aspersions on them. And I was stunned to hear that Michael actually has a step-daughter with an intellectual disability. Turns out, Michael is not offended by the “R” word as a parent and did not seem to be aware that its use is no longer deemed appropriate.

I wondered how a person – especially one who has a family member with a disability – could be so oblivious to the fact that the “R” word is no longer acceptable but I reminded myself that he lives in a small community in North Alabama, which could explain a lot. Rednecks can be slow to catch onto trends.

Ouch…that stings because I, too am a redneck from North Alabama.

When I tried to explain to him that the “R” word is inflammatory and negative, he was a bit defensive in his stance that you can’t eliminate a word from the dictionary just because some people find it offensive.

Here is one thing Michael said to me (paraphrased):

People with retarded afflictions shouldn’t be put in jobs that don’t match their skill set.

So I asked him to substitute other offensive words in this sentence and see if he thought it would be acceptable to say them live on the radio, like this:

Faggots/niggers/chinks/kikes/dagos/wet backs/rag heads/crackers shouldn’t be put in jobs that don’t match their skill set.

I think a “lightbulb” went off for Michael.

The surprising thing was that the longer we talked, the more I liked Michael, even though I was primed to take his head off. He truly didn’t intend to offend people with special needs or their families. He truly intended to simply ask what he thinks is a valid question. He is truly grateful for the job his step-daughter has and knows that she takes pride in having a job she can do independently and well. He truly wants other people with special needs to have that same employment experience- he doesn’t want them to be placed in jobs that are inappropriate for them because he truly hated to see two people with special needs becoming frustrated when they were unable to be successful in their assigned tasks.

Michael said to me, “When a door slams in your face, a window will open and I think this happened today so that you and I would have this conversation.” He’s promised to issue an apology/clarification on air tomorrow and has invited me to be his guest on his show in September, an invitation I’m happy to accept.

I may not agree with his politics or enjoy conservative talk radio but he’s not a bad guy…he just made very poor word choices. I do the same thing every day when I drop “F” bombs around. There are certainly people who tune me out or become outraged with me because I say “fuck,” even if they agree with my message. So a lightbulb went off for me, too.

Although I’m sure I will continue to drop “F” bombs when I believe they are appropriate and while “fuck” may be offensive to some people, it is an adjective or a verb, not a noun used to disparage someone.

Which brings me back around to words and their power. We have advocacy groups telling us every day that certain words aren’t acceptable, from the NAACP to the LGBTQ. So I am adding my voice to the chorus of voices that are trying to tell our society that we are all more alike than we are different…and not just in matters of race, ethnicity or sexual preference.

It’s not okay to call anyone names, people.

People with special needs are people…they are not just a diagnosis or a stereotype. They are people with feelings and they deserve to be respected, by us and by our words.

We All Have Special Needs

I am at a convention called BlogHer. There are 4,000 bloggers here with me. I feel very small and I have so much to learn.

One of this morning’s speakers talked about how connecting with a community of bloggers and with her own readers helped her come to terms with her son’s autism diagnosis. Another keynote speaker, Jenny Lawson – The Bloggess and author of the book Let’s Pretend This Never Happened, spoke about the response she received when she shared with them that she has a mental health diagnosis. Her readers responded with thousands of comments that shared the refrain, “I thought I was alone.” She has emails from people who told her they were on the verge of suicide and read her blog post, and the comments left by the community of people who also have a mental health diagnosis, and decided not to end their lives.

This huge conference has attracted speakers, vendors, panelists and writers of every variety. The event organizers had their pick of keynote speakers, as this conference has brought together women from around the world who blog about an array of subjects.

I wondered, as I listened, if they intentionally chose women who have had experiences with “disability.”

Abbey & me at NRG Dance Project in Atlanta last year

Me & Abbey at NRG Dance Project in Atlanta last year

And then I remembered Abbey’s words to me and realized it wasn’t a coincidence that these two keynote speakers would reference issues that millions of people live with.

Abbey is 14 now but when she was 12, she said the most impactful thing that anyone has ever said to me in my life. Abbey has cerebral palsy and knew about my son, Austin’s, struggle with addiction.

Any time he was away at an alternative school or residential treatment program, she asked for updates on his progress. And so while he was in Atlanta, at what would turn out to be his final treatment program, as he is well into his second year of sobriety, Abbey asked me how he was doing.

I told her that he was doing great and that we thought he might finally be ready for real recovery.

She said:

“I’m so excited!!! I’ve been thinking about Austin a lot lately and thinking about him has made me realize something.”

I listened, and she continued:

“Miss Debra, we all have special needs … and we all have two special needs in common:
We all have the need to be loved, and we all have the need to be accepted.

And then she said, “Some people’s special needs are on the outside, like mine. And some people’s special needs are on the inside, like Austin’s.”

Ashley, Abbey & Austin in 2011

Ashley, Abbey & Austin in 2011

I took such comfort from these words, spoken to me by a 12-year-old girl who will never be able to tie her own shoes or walk without difficulty.

It was not a coincidence that two of this morning’s speakers have been affected by a diagnosis. Because Abbey was right – everyone has special needs of one sort or another. Some people’s are just easier to recognize than others.

I’m going to soak up everything I can from this conference … so I can be a better writer and a better advocate for the people with special needs that I know and love.

More importantly, I hope to learn how to use this blog platform as a springboard for spreading Abbey’s message of acceptance, of tolerance, of recognizing that we are all more alike than we are different.

Having Choices

The Connection field trip to Garden Cove Produce

The Connection field trip to Garden Cove Produce

 

For some reason, people tell me their problems. I avoid eye contact with people beside me on airplanes or in line at the dry cleaners because next thing I know, they are telling me about their awful spouses or their problems with work. I have found myself caught in conversations with complete strangers about the most personal of topics, like the time I was minding my own business at an Alabama football game and a woman proceeded to tell me all about her menstrual cycle, in gory detail. Completely unsolicited …

My friends used to unburden themselves to me like I was Dr. Phil or something. When I was younger, I was an enthusiastic audience for my friends’ complaints and worries, happy to dispense my sage wisdom while telling myself that I must have my shit together or else they wouldn’t be asking for my advice or trusting me with their deepest secrets. Not so much anymore. These days I’m too busy – and so are most of my friends – to engage in the sort of self-involved pity parties and pop psychology that I used to find so interesting.

Every now and then, I’ll end up in a conversation with a friend who wants to tell me about the wretched condition of their life …

“I’m so unhappy in my marriage”
“My business is failing”
“My husband doesn’t understand me”
“I shouldn’t have gotten married to him/her/at all”
“I don’t like the girl my son is dating”

And on and on and on.

I’m never sure if they want me to sympathize with them, offer them solutions or just let them whine. A few years ago, I would have been inclined to listen with empathy and then offer advice that I’d heard on Oprah but these days, I find myself wanting to tell them to shut the hell up and put on their big girl (or big boy) panties.

It seems to me that most of the time when people are dissatisfied with something in their lives, the real problem isn’t what they’re dissatisfied with … the real problem is that they are unwilling to take action or make a tough choice. So you’re not satisfied in your marriage? Then fix it. You don’t like where your career is headed? Then change it. Wish you hadn’t gotten married to him/her/at all? Too late, you did, so find a way to make it work.

Of course, it can be daunting to take the first step towards making changes that need to be made but you have to start somewhere, with some sort of action. I would rather do the wrong thing than do nothing and have a hard time understanding people who would rather wallow in misery than take action or make a choice. And the longer I work with people who have special needs, the more adamant in this opinion I become.

See, those of us who are “typical” have choices. People with special needs, in many cases don’t have choices. People with special needs learn to be happy with what they have because often, they have no other option. Like a woman in our day habilitation program for adults … I’ll call her Margaret (because there’s no one in my program for adults whose name is Margaret).

Margaret is older than me and has an intellectual disability. She has no family to speak of and lives in a group home. Margaret has anxiety over trying new things…new activities, new foods, new people, changes in routine cause her tremendous angst. Margaret doesn’t get to make many choices in her life…she has to roll with the punches life throws her even when she’d rather not. When we added yoga to our daily activities, we had to coax her to give it a try. I watched her fight off the anxiety and force herself to try something that was frightening to her. Margaret powers through things, even when they’re scary or not particularly appealing to her and she doesn’t complain.

 

Connection yoga class

Connection yoga class

 

A couple of weeks ago, we took the adults in The Connection on a field trip to our local farmer’s market. I was afraid Margaret might have a hard time on the trip, worrying about how we would get there or what time we would come back. When we walked into the market, I was standing beside her and when she cried, “Oh!” I thought she was upset. But when I turned to ask her what was wrong, I saw tears in her eyes and a wide smile of genuine pleasure on her face.

“Debra,” she said, “thank you for bringing us here. I haven’t been inside a grocery store in 15 years.”

Wow. Such a simple thing that I take for granted – no, that I complain about – brought Margaret such joy. As I watched her walk through the market, touching all the produce, I thought about all those times that I’ve complained about my problems, or listened to others complain about theirs, and I was ashamed.

 

Cool photo by Katie Stapely

Cool photo by Katie Stapely

 

I gave each adult $5.00 to buy something and was even more ashamed when Margaret asked me if I had enough money to buy sweet potatoes for everyone in her home … ashamed because Margaret was thinking about other people when I so often only think of myself. She started to get anxious about how she would be able to carry all the potatoes home with her, whether they would fit in the van, worried she might forget them but as I calmed her down and told her that we would make sure the potatoes went home with her, she grabbed my arm and said,

“Thank you for making me come today. I didn’t really want to but I’m so glad I did.”

I’ve had so many moments like this in the past six years … moments when I glimpse through the words or actions of people with special needs exactly how the rest of us ought to live.

 

Paul learning about nutrition

Paul learning about nutrition

 

I don’t get this right all the time but I’m trying so hard to remember it … that if there’s something in my life that isn’t working, I should fix it. If there’s something I’m doing wrong, I need to correct it. If there’s someone I’m hurting, I need to stop it. If there’s something I could be doing to make the world better for someone else, I should get busy.

Because I can … because I have choices … because I can complain about things I wish were different or I can choose to do something – anything – to make things different.