A net story by Reingard Eberle

A few weeks ago, I was visiting the maternity ward of our hospital

My dear work colleague has born her first child on 18. 7. A son.

The birth was not entirely without complications and unfortunately also somewhat traumatic for mother and child. It took some time until both had recovered enough to be visited. Therefore there were accordingly many visitors in the hospital the following weekend.

Of course they also talked about the birth and the young mother was so honest that she secretly wished for a girl, but of course the joy about the pretty little boy is very big. Sure.

On such occasions, the inevitable sentence comes: “As long as you’re healthy…”

So was this day. And it hits me right in the heart. Still. After 28 years now. As long as it’s healthy, of course! Who wouldn’t want a healthy child, right? But… if the newborn child isn’t healthy? or has a disability?

Our second son Thomas was born on 8. 3.1990 with spina bifida.

At that time, before the birth, we learned of our son’s impending disability. In the seventh month of pregnancy the splitting of the spinal cord was detected.

Right in the first hour after the diagnosis, abortion was the order of the day. Even though I was already in my seventh month. In addition, one must know that a child with a disability can legally be aborted until the end of the pregnancy.

The diagnosis was a shock to us. Until that time we had no idea what spina bifida or an “open back” was supposed to mean.

Words like hydrocephalus, multiple disabilities, mental disability, never being able to sit, never being able to walk, etc.

you’ve probably heard it before, but it’s always the others … it never affects you. We did not make the decision easy, but we decided in favour of our son and carried out the pregnancy.

On 8. 3.1990 at eight o’clock in the morning our son was born with a caesarean section.

The supposed and hoped for miracle did not happen.

My son had a large blister in his back in the lumbar region. His legs were very thin and hardly developed without muscles. Our first child was then just over two, I was 25 years old and totally overwhelmed by the whole situation.

In the maternity ward I was kept completely separated from the other women in childbed.

I guess they didn’t want me to have the other mothers with the healthy babies, or I’d have you, who knows? Looking back, I have never again felt so alone and helpless as when I was in hospital. Thomas had to spend the first three months in the incubator.

From my initial overstrain, an improbable will to fight was born very soon.

I did not see my son in a “sheltered workshop”, but as a full member of society. Fortunately for me and for us, there was a movement of other parents of children with disabilities who joined together to fight for the integration of their children.

So do I. For more than 10 years I was, among other things, also chairman of the association in our federal state. From the beginning Thomas was always integrated in the toddler care, kindergarten, elementary school and later in the secondary school.

The inclusion of my son was not without difficulties and setbacks.

It would not be honest if I did not have to admit in retrospect that we had often enough reached the edge of our resilience. Our marriage fell apart after eight years and we went our separate ways from then on. But despite all the pain, it was worth it. Today my son leads an absolutely independent life despite his wheelchair.

How could this issue be dealt with in the future?

Admittedly, the work in the inclusion of people with disabilities over the past 30 years has not passed without traces and much has changed for the better.

But it is a constant work that must not be neglected.

The ideas of the world of the “non-disabled” to the “disabled” are not yet the same. All too often the views of the “non-disabled” are imposed and imposed on people with disabilities. The majority of people with disabilities are placed in special institutions, the number of children with disabilities in public schools remains at the same level each year, and the trend is rather downward. Nine out of ten unborn children with a diagnosis of disability are still aborted.

• I wish for a future in which every child, whether healthy or sick, whether born with a disability of any kind, can be born.
• I wish for a society in which “as strong as its weakest link” not only empty phrases, but matures into a lived tradition.
• I wish for more and more adults who can maintain their childlike trust and curiosity in the otherness of every human being.
• I wish for a world in which every person can be as they are. No matter what skin colour, no matter what origin and no matter what disability. Everyone is in his own way what he is: a human being.

…. and perhaps in 100 years the diagnosis “your child will be born with a disability” will lose its horror ..