First my healthy sister arrived, then my brother, Stephen. He was diagnosed with Down syndrome, I believe. My parents were told he also had a common related congenital heart problem that would limit his life expectancy, which they understood to be only a few days, weeks, or months.

My parents were also informed that a charitable group would adopt Stephen, with their approval. But if so, the agreement would mean that the charitable group would have no communication with my parents regarding Stephen, even when he died. My parents gave their consent and never heard about or saw him again.

Still I heard his story many times. On my birthday my mother would remind me: “If Stephen would have lived, we wouldn’t have had you.” She would say this in a gentle voice, and I thought she was meaning to reassure me that I was a valued member of the family, though I guess she never knew what that phrase would mean to me. I’m sure she was haunted by his loss, yet her comment continued to haunt me as well. If only Stephen had been healthy enough to live a full life, I myself would never have seen the light of day. So should I be glad that he’s gone?

Some years later I took a closer look into Down syndrome and found that the congenital heart defect did limit life expectancy, but to 30 or 35 years, not 3 or 4 days. Meanwhile, a heart surgery technique to correct that problem had been developed within the time period of Stephen’s previous life expectancy.

Would the charitable group that adopted him have been able to provide for his heart surgery many years ago? Did he actually live longer than originally expected? Is there any chance he could have survived till now? And if so, where could he possibly be, how could I possibly find him? Or is this just my imagination?

For years I had a birth certificate in an envelope, and I would bring it along anytime I thought I might need it. Except then one day I took a look and discovered it was Stephen’s birth certificate, not mine. How could this have happened? I asked myself. Since then I seem to have misplaced it, complicating my confused identity.

Whenever I have seen or known someone with what we now call developmental disabilities, I would always feel a connection, though I wouldn’t know what to say or think about it. I remember 45 years ago when I was a counselor at a local YMCA day camp and relentlessly advocated that we keep such a kid, with developmental disabilities, at camp for every session during the summer, even though his parents couldn’t afford to pay a penny.

Back when I was growing up, it was standard practice to institutionalize people with developmental disabilities for life, kept away from and unseen by people in their community. The developmentally disabled were excluded from society, often living under conditions and circumstances we would now consider intolerable.

How times have changed. A couple years ago I began providing public relations services on behalf of Camp CaPella. On Phillips Lake in Dedham about halfway between Bangor and Ellsworth, Camp CaPella provides “quality-of-life experiences” for children and adults with physical and developmental disabilities. As I learned when I first visited Camp CaPella and am always telling people these days, when you see the laughs and smiles on the faces of those kids, you know this is a good thing for all of us.

That connection recently led me to Downeast Horizons, a nonprofit provider of services and support to adults and children with developmental disabilities in Hancock and Penobscot counties. Now I’m providing public relations services on behalf of Downeast Horizons. That’s where I just learned a lesson I have been seeking for years.

I toured some of the facilities of Downeast Horizons, visited some homes where support services are provided to residents, and I met a few of those who live there. Tony Zambrano, executive director of Downeast Horizons, kept saying there was so much we could learn from the program participants. I wasn’t quite sure what he meant until I saw it for myself.

So a couple weeks ago I went to the Downeast Horizons 2010 annual dinner in Bar Harbor to learn more. It was held in a huge conference room, and more than 200 people attended the event — children and adults with developmental disabilities (program participants), family members and members of the staff and board of directors. And there were smiles on the faces of everyone in that room.

Each program participant at the dinner received a surprise gift, selected for each individual by a member of the staff. Drawings were made one at a time, the winner was announced and that person jumped up to get their gift, cheered by the crowd.

There it was. People with developmental disabilities can smile, laugh and enjoy themselves. They can have healthy lives. They should be seen and welcomed within the community. Providing support services to them should be supported by us all.

We are family. You know someone with disabilities. Members of my family have such disabilities. Let us bring them into the open rather than hide them from sight. Let us give them opportunities to smile and enjoy their lives. Don’t exclude them: Include them!

Now I feel like I’m standing up for my brother. Stephen, wherever you may be, know that I’m with you in spirit, and I’m going to help give you — and people like you — a voice.