What I Know About Marriage On The Eve Of My 30th Anniversary

On March 22, 1986, at 2:00 p.m., Alan and I got married.

Our wedding day...so young and in love!

Our wedding day…so young and in love!

We had dated for five years already. We were young, naive and in love. Thirty years later, we are older and wiser but we’re not “in love” anymore. What I feel for him after 30 years has no resemblance to the feelings I had on the day I said, “I do.” At 25, he made my heart flutter…and I thought that’s what love was.

The boy I fell in love with at 21. Isn't he adorable?

The boy I fell in love with at 21. Isn’t he adorable?

At 55, he makes my heart swell…with gratitude and pride…gratitude that we are still together and pride that we have beat the odds (And he does still make my heart flutter…just in a deeper, more profound and more meaningful way!).

Statistics say we shouldn’t still be married. I’m damn proud of us…for course-correcting as we go and for keeping our eye on the prize. There aren’t a lot of folks our age who can say that they’ve only been married once because it’s hard work. There have been many times during our thirty-year marriage when one of us may have wanted to throw in the towel and we’ve both given each other many reasons to do just that. But we didn’t.

So, in a spirit of self-congratulations, I offer you my unsolicited advice on staying married. Wherever you may be on the relationship journey, here’s what I know to be true:

  1. Start by choosing well. We knew enough about each other’s basic value system that we could confidently state we shared same approach to life and wanted the same general outcome. Before Alan, I had never met anyone who looked at life and its purpose through the same filter as me. We shared the same basic philosophy about religion, politics, money and family, although we were too young to have tested any of the theories we held on these topics.
  2. Always respect each other. We may not always agree and we definitely utilize different tactics to get where we want to go but we have a deep and abiding respect for what the other brings to the table.
  3. Understand that if you dissolve a marriage, the issues within that marriage will follow you. The problem with getting divorced is that unless you do a tremendous amount of personal work, the issues that broke up your marriage will continue to haunt you…and they will be magnified by the divisions divorce creates. We figured we might as well stick it out with each other because had we chosen to walk away from our marriage, our personal shortcomings would still be there, staring back at us in the mirror. We both have a lot of personal growth still left to do but we’ve always agreed that it would be easier to do that growth side by side than it would be to do that work apart, with the complications of second marriages, stepchildren, and all that goes along with divorce.

    Our young family in 1992

    Our young family in 1992

  4. Find things to be passionate about together. From the Beatles and the arts to Alabama football, we have always looked for ways to share mutual enthusiasm. There are lots of things we enjoy separately and those things are important to us as individuals but there are some things that we invest our energy into equally. These shared interests give us something to focus on when our separate interests collide.
    He likes to fish. I like to shop.

    He likes to fish. I like to shop.

    And we are lucky that all of our shared passions clicked together when we created Merrimack Hall.

    With a few of our students in 2014

    With a few of our students in 2014

  5. Focus on the legacy that your marriage will leave. I imagine that all people who have long-term marriages have a commitment to leaving some sort of legacy – for their children or their religion or their profession or their community. Alan and I both know that separately, we can leave a mark and we both have. But together, we can make a more powerful statement. I bet every couple who’s been together long enough will say the same thing.

And the most powerful thing I know about being married is this:

7. “We” is more important than “me.” We have approached every challenge and every triumph from the mindset of “we.” There have been dozens of times when what was best for “we” might not have been what was best for either of us personally but we were committed to the notion that when we said, “I Do,” we were forging an alliance that was more important than either of us as individuals.

As I scrolled through photos to use for this post, I was struck by the fact that we all have pictures of ourselves and our lives at our best. I have hundreds of photos of Alan and me at moments of great personal achievement and of great happiness.

Meeting Sir Paul McCartney...definitely a high point

Meeting Sir Paul McCartney…definitely a high point

Receiving the Humanitarian Award in 2014

Receiving the Humanitarian Award in 2014

I wish I had photos that show the turmoil, heartbreak, anger, frustration, chaos and sadness that have marked our 30-year marriage because those would be the photos that really tell the story: when the bank balance is “zero;” when parents age and die; when children veer off course and we fear for their future happiness; when arguments escalate into low-blow name-calling; when business ventures fail; when we embarrass ourselves in public; when we make mistakes that the other predicted but we wouldn’t listen to their advice; when we vehemently disagree on matters of great importance; when we hurt each other…these are the photos I wish I had because they would be the ones that tell the story of staying married for 30 years.

I treasure the moments of heartache and hurt almost as much as I cherish the memories of happiness and joy because it was in those moments that seemed the most hopeless that we chose to remember that WE are more important than ME. And that’s why we’ve managed to stay married for 30 years.

So, Alan, love of my life and best friend forever, congratulations to us. If we’ve made it through everything life has thrown us so far, I’d say we’re golden for the next 30 years. And to borrow Chelsie’s phrase, Alan…you I love.

 

 

Caitlyn Jenner…Don’t Shoot The Messenger

In this blog, I advocate for people with special needs. My mantra has been, “We’re all more alike than we are different” and “Normal is a dryer setting.” I was starting to think that our culture might be turning a corner, that maybe we were reaching a tipping point where the differences between us mean less and the similarities mean more. And then along comes marriage equality and Caitlyn Jenner and some people’s reactions to them makes my hopefulness seems premature.

One of my precious friends

One of my precious friends

I watched Caitlyn Jenner’s speech online the day after the ESPY Awards and cried when she said, “We’re all different. That’s not a bad thing. That’s a good thing.”

When she spoke those words, I thought of all the people with special needs I know and love and hoped that those words of tolerance might be applied to them…hoped that the athletes and celebrities in the audience and the millions watching at home – might think of those words the next time they see a person with Down syndrome or autism or cerebral palsy or any other disability…thought that maybe some awareness might be raised.

To me, anytime anyone advocates for the acceptance of others who are different, it’s a win for everyone.

And yet, I look at my newsfeed and see that some of most vociferous objections to the LGBT movement and to marriage equality are coming from people who have family members with special needs. In message threads on the pages of people I know and on special needs blogs I follow, I see spiteful, hateful, intolerant comments. Most of them, of course, identify as conservatives or fundamental Christians. In numerous comments I read, people called Caitlyn Jenner an “abomination.”

It wasn’t too long ago that people with disabilities were called the same thing.

Alan and me with some of our favorite people

Alan and me with some of our favorite people

A few months ago, I had a meeting with a parent of a person with special needs. For nearly two hours, the parent told me they basically have a zero tolerance policy regarding discrimination against their family member. As the meeting ended, the parent made a disparaging remark about someone who is gay.

How screwed up is that? You don’t want anyone to discriminate against your family member who has a disability but you are okay with judging someone because they are gay? Someone please explain that one to me.

A gay teenager I know wore a pink tiara on his 17th birthday. A teenaged girl told him to take it off. He asked why and she told him that boys weren’t supposed to wear pink, nor should they wear tiaras. He told her that it was his birthday and he could wear a tiara if he wanted to. She told him he was weird. She told him that if he didn’t remove the tiara, she couldn’t be friends with him any longer. She said, “You are a freak.”

He told me later that he was shocked by her words…not because he hasn’t heard words like them before but because the girl has Down syndrome. “We’re both different from the norm,” he told me. “Shouldn’t we stick together?” I would certainly think so.

Two of my favorite guys!

Two of my favorite guys!

Caitlyn Jenner offered a powerful message in her speech – people who are different from what most people define as “normal” should matter…to everyone. No matter what your opinion of trans people may be, even if you think that she’s just a “rich man in a dress” as Conservative Christian blogger Matt Walsh says, Caitlyn used her celebrity to shine a powerful spotlight on a group who has been marginalized.

And anyone who is willing to start a national conversation about how we are all people, no matter how different we are from each other, is doing a great service for anyone who has ever been marginalized.

If everyone would focus on the message instead of the messenger, maybe we’d get somewhere. Instead of focusing on the “rich man in a dress,” shouldn’t we be focused on Caitlyn’s message that every life matters, even if it is drastically different from your own? Instead of focusing on your definition of marriage, wouldn’t it better to focus on the notion that no one’s love is more important than anyone else’s?

I have learned to appreciate the value of every life by spending so much time with people who are largely ignored and overlooked, treated differently because they have an extra chromosome or can’t walk or talk like I do. And when I hear someone – even a “rich man in a dress” – proclaim that it’s okay to be different, I want to believe that the message will resonate and spread acceptance and understanding over us all. But then I read comments and blogs, oozing with judgement and hypocrisy and it seems like those who most need to “get it” are totally missing the point.

Advocates and family members of people with special needs celebrate when “one of their own” receives some sort of national recognition. Like this man who owns his own restaurant or this young woman who is breaking into professional modeling. They celebrate because these success stories start conversations and help people who don’t know someone with special needs see them in a different light.

Whenever the nation’s attention is focused on the topic of diversity, in any form, it elevates the understanding of diversity for everyone.

Whether the conversation is about gay people or racial minorities or trans people or people with special needs…if we can open our hearts to one group who is different from us, it makes it easier to open our hearts to other groups who are different. I can’t understand people like Sarah Palin, who has a son with Down syndrome, when she defends that nut case Duck Dynasty guy who compares homosexuality to beastiality. She doesn’t want you to use the “R” word but it’s okay with her to use inflammatory and derogatory language about homosexuals. I just don’t get it.

Two amazing teens!

Two amazing teens!

I suppose there is one big difference between the treatment of people with special needs and people who are gay or trans. Basically, people with special needs are discounted, maybe pitied and a large portion of our society thinks they don’t have much to contribute whereas gay and trans people are despised by many, considered by some to be morally bankrupt and headed straight for hell. I don’t know what’s worse – to be hated or forgotten.

If you believe that same-sex marriage is wrong, then don’t marry someone of the same sex. If your God and your Bible tells you that homosexuality is a sin and if you believe that accepting the LGBT community means the end of civilization as we know it, then by all means, go to your church and pray for your salvation. But don’t tell me that the only differences that matter are the ones that pertain to you. Don’t tell me that your brand of different is more important than anyone else’s. Don’t tell me that people with special needs don’t deserve to be marginalized and then turn around and marginalize someone else because when you do that, your hypocrisy trumps your message.

Having fun with some of my friends

Having fun with some of my friends

Everyone is different. That’s what makes life so interesting and beautiful and precious. Surely, there will come a day when we will be a society that says, “I may not understand you but I respect and value your life experience” instead of one that says, “If you don’t agree with me, or look like me, or behave like me, or believe what I believe, then you’re wrong and you are my enemy.”

Maybe we’ll become a society where anyone who has ever been mistreated will stand up for anyone else who is mistreated.

It’s probably going to take a lot of messengers – including men who “wear dresses” and women who marry women – to get us there.

 

 

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