By: Katherine Itacy, Esq.
Dated: July 8, 2018
As I read journalist Ben Mattlin’s fantastic new book, In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance, this past week, it made me think about my own interabled marriage.
Mattlin describes an “interabled couple” as one in which one partner has a disability and the other is able-bodied. And that’s exactly what Yvens and I have become (for better or for worse).
Throughout the book, Mattlin (a quadriplegic Harvard grad who has two biological children and a wife of over twenty-six years) describes his interviews with numerous other interabled couples. The couples include those with physical and/or mental disabilities; those both interabled and interracial; those in which the disability occurred before the relationship, as well as those in which it occurred afterwards; those with and without professional aides; and those with and without children.
A recurring theme throughout the book involved the additional strain/pressures that most of the couples felt from finding a balance between the assistance and care needed from the able-bodied partner, and the sense of independence, privacy and pride of the disabled partner. Several felt as if the struggles endured due to the reliance upon the able-bodied partner strengthened the bond between them, whereas others acknowledged that it created too much of a strain on their relationship and intimacy. It’s hard to feel sexy and wanted if your partner has been spoon-feeding you and changing your colostomy bag. Several said that it’s preferable to have a paid professional handle most of the daily care for the disabled person. Thing is – it’s costly and not something within every disabled person’s budget.
I, like most of the disabled persons described in the book, have progressive, degenerative disorders. While my second spinal surgery in late March should help slow down the progression of my tethered cord syndrome, and most of my diabetic complications have stabilized for the most part (for now), we have no idea what’s in store for me in the coming years. All I know is that there’s likely nowhere to go but downhill.
The more my health deteriorates, the more urgent it will become to decide as to whether Yvens can/will/should become my caregiver, or whether we can afford to hire professional help to assist me. As it is, Yvens is the only one of us working. While we were living together and he came home from work, he was left to perform practically all of the household duties and yard work. When I was too fatigued or in too much pain to get out of bed and cook, he made sure that I ate and checked my blood sugar regularly.
And while he did all of that willingly, without me asking for it and without complaining about it, I (like a few of the disabled persons featured in Mattlin’s book) feel extreme guilt over it all falling on my partner’s able-bodied shoulders. Regardless of how many times Yvens tells me that I have more important things to be concerned about than him carrying the load for the both of us, I can’t help it!
I’ve already lost a lot of my capabilities and sense of independence. And having previously been in a relationship in which I carried about 99% of the load of housework and financial duties (while working about 100+ hours per week), I hate placing that burden on Yvens; I know how it feels!
Mattlin’s book has certainly helped me to accept (as Yvens has repeatedly told me) that he’s helping to ease my burden and lighten my load because he loves me, and is more than willing to do it. It’s not simply out of a sense of duty or pity or feeling trapped, and it’s not building resentment towards me. Every couple has its own struggles, and in ours (as in so many others’ around the country), our major struggle concerns my disabilities.
What’s been really helpful and reassuring is that Mattlin notes how the disabled person in the relationship also brings his or her own benefits and strengths to the relationship, even if it’s not in the form of monetary gains or manual labor. We, as disabled persons, bring our own sense of emotional support, humor, encouragement, fiscal knowledge, parenting skills, love and friendship to the relationship and to our partners.
I know that it’s going to take me a while to come to terms with the fact that I can still positively contribute to the relationship, even if I’m no longer able to contribute around the house or yard, and despite the fact that I often need help from my husband in order to make it through the day. So while I continue to work through my feelings of guilt and shame and uselessness, my attention keeps redirecting to another issue at hand: children.
Now, my husband has an amazing, joy-filled seven-year old son, Eli, from a previous relationship. Eli lives with his mother in Orlando, while Yvens currently lives and works in Detroit. We try to see Eli at least 3-4 times per year, and in fact, we just spent the Fourth of July holiday week with him. But this was the first time that I saw him post-surgery, and the first time that I traveled by plane after the surgery. In one word, it was rough.
My husband is great about keeping an eye on my pain and energy levels, since I’ll often try to minimize it in order to still spend time with Eli and the rest of Yvens’ family. Unfortunately, even though Yvens made sure that we didn’t travel too much or visit with the family for too long, the pain and exhaustion hit me like a ton of bricks just a few days into the trip. In fact, I fell asleep while visiting with his parents, and even had to stay behind at the hotel towards the end of the trip.
This really killed me in terms of losing out on bonding opportunities and special moments with my stepson. I love playing his imaginary games with him and hearing his infectious giggle.
So what of Yvens and I having our “own” child? Since my disabilities make it impossible for me to safely bear a child naturally, we understand that we’d have to adopt in order to have a child.
The thing is, my physical limitations now scare me when it comes to raising a child. If I can’t hang with a seven-year old for more than a few days every few months, then how could I share child-rearing responsibilities full-time??
And yet. There are countless interabled couples that raise children (some of whom were conceived naturally; some through surrogacy, and some through adoption), and raise them well and with so much love. In fact, many of the couples in Ben Mattlin’s book have raised children together, including Mattlin and his wife.
Actually, at the end of the book, Mattlin includes a portion of an essay that his eldest daughter (now in her 20s) had to write a few years back for school. This is how she describes her experience being raised by interabled parents:
“The basic realities of having a physically disabled parent have affected who I am in meaningful ways and made me a more thoughtful and independent person.
I started to take responsibility for fulfilling my own needs at a young age. The point at which a child is no longer the one who needs the most help with basic tasks usually comes with the birth of a little sibling. For me, it came as soon as I was able to raise a spoon to my mouth more effectively than my quadriplegic father. This instilled in me the knowledge that often the most pressing need is not my own. It also taught me, however, the importance of asking for help when I need it. My dad has shown me that there is nothing wrong with asking for what you need, and his fight for reasonable accommodations often helps others who need the same things.” [FN1]
My stepson has already learned that his stepmom sleeps a lot, gets tired easily and is often in too much pain to get out of bed. While that makes me really sad that he’s had to learn that at such a young age, maybe he (and any adopted child we may have in the future) will use these experiences with a disabled stepparent to gain a greater sense of independence, as well as a better understanding of how to respect your physical limitations and ask for help when you need it.
Right now, I’m still recovering from my surgery and adjusting to my new quality of life, so adoption would have to wait for a while, anyway. And even if/when we did look into it, there’ll most likely be barriers that we’ll have to face as an interabled couple. As Mattlin notes in his book, despite the fact that the ADA makes discrimination against disabled prospective adoptive parents, it still happens. And when it comes to adopting from a foreign country, disabled persons sometimes face outright bans against adopting a child, with no legal avenue through which to challenge it.
Sadly, there are still a lot of ignorant (and inaccurate) assumptions out there that a disabled person, even if coupled with an able-bodied partner, wouldn’t be able to provide quality, loving, engaged parenting to any child. And maybe I’m contributing to that with my own assumptions; assumptions that I won’t be able to be a “good enough” parent to an adopted child.
Sure, as Yvens and I were recently discussing, no parent is perfect. Every parent makes mistakes along the way; every parent makes decisions regarding the rearing of their children that may not pan out to be the best decision in the long run. And every person seems to have hangups from their childhood days as to one or both parents. But as long as the parent(s) involved give their best efforts, and make decisions from a place of caring and love, that’s all we can ultimately as from them; these imperfect beings.
Maybe I’d make my child feel neglected because my medical needs would overshadow their need for attention. Or maybe their life experiences, their struggles would provide the child with a greater sense of independence and empathy towards others.
I know, without a shadow of any doubt, that I would love and care for any child of mine with all of my heart; just as I have with my stepson, as well as all of my “nieces” and “nephews” out there.
So who knows what’ll happen in the future. There’s a lot of education and acceptance that needs to happen on my part first. But I’m so thankful for Ben Mattlin, his recent book, as well as all of the inspiring interabled couples out there. I want to thank them all for their strength, as well as for their vulnerability in sharing their stories with the world in order for more acceptance and understanding towards these persons. Hopefully, it’ll continue to eradicate some of the stereotypes as to the abilities (or lack thereof) of those with physical and/or mental impairments or limitations.
Mattlin’s book has certainly opened up my eyes regarding these issues, and has certainly helped me feel less alone in my thoughts and guilt as a disabled person in an interabled relationship. I’m so lucky that I have a partner who helps me fight against those feelings of guilt and inability. I truly help that each differently-abled person in this world has at least one other person in their life that can provide that kind of support; especially in those moments when we disabled persons can’t support ourselves.
If you have any thoughts or insights on Ben Mattlin’s latest book, or on the issue of interabled couples/families, you can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.
’Til next time, my friends!
[FN1] – Ben Mattlin, In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance 232 (2018) (emphasis added).
My name is Katherine (Johnston) Itacy, and welcome to my site! I intend to use this site to explain who I am, the journey I’ve been on, and the lessons I’ve learned along the way.
Born and raised in Warwick, Rhode Island, I am a 29+ year-long Type I Diabetic who threw the 20-pound weight and hammer throw in high school and college. After setting both state and national high school records, winning eight national high school championships and competing in the 2000 World Junior Track and Field Championship in Santiago, Chile, I earned an athletic scholarship to Penn State.
Later, I earned an academic scholarship to Roger Williams University School of Law. I loved law school; I joined both the moot court board and the trial team, conducted research for several professors and a private attorney, and graduated fourth in my class. I spent a year working for a private criminal defense attorney before pairing up with a classmate in his practice, and eventually, going out on my own. I spent five years running my own law firm in Rhode Island and Massachusetts, focusing on pre-trial, trial and appellate work for criminal defendants, and hearings and appeals for convicted sex offenders. I joined the Rhode Island and National ACLU board of directors, as well as the Rhode Island Association for Criminal Defense Lawyers board of directors, and did pro bono work for both the ACLU and for indigent criminal defendants.
Running my criminal defense law firm was the most rewarding experience I have ever had, but it took its toll on my diabetes. During four of the five years I ran the practice, I underwent over three dozen surgeries. Diabetes had attacked my eyes, my hands, and the nerves in my elbows and wrists.
In November of 2014, I took a job in Del Rio, Texas, as a legal research and writing specialist for the Federal Public Defender’s Office for the Western District of Texas. I loved my work there, but my health began to deteriorate further, to the point that I could no longer perform my job responsibilities. I developed an incurable spinal nerve pain disorder called adhesive arachnoiditis, as a result of a 1988 lipoma/tethered spinal cord surgery. The diabetes has also caused benign tumors to develop in my breasts, and has damaged the nerves in my lower body.
For the last 22 months, I have been on a mind-numbing journey to find adequate health care, including a sufficient drug protocol to help alleviate my daily pain. I have also had to adjust to my new quality of life, and to accept the fact that I can no longer pursue my life’s calling.
I hope that you can use this blog site (as well as the book I am writing) as a resource. I will be using both the site and the book to document my life’s journey, and to share some of the life lessons I have learned from living in a diseased body. My poor health has motivated me to live the fullest life possible, but I have days (as I am sure that many physically disabled persons do) when I feel as if the medical system and my body have failed me. We all need an avenue to vent our frustrations, and to feel as if we are understood. I hope you will find that you can do those things here.
I look forward to hearing from some of you as to what struggles you have faced with your health and with the medical system in America. We all need emotional support from time to time, and I am confident that we can find that in one another. I wish you all good health, and a full, happy life!