Siblings

Confessions Of A Sibling – I Wish My Sister Did Not Have Down Syndrome

i wish my sister did not have down syndrome

So, I often see articles where persons speak about how much of a blessing it is to have a sibling/child with Down Syndrome (DS). Honestly, I struggle with this sentiment. Do I love my sister? Absolutely. I think she’s a fabulous chick. I also think what makes her fabulous has nothing to do with DS…it’s who she is as a person…it would still exist if she didn’t have DS. That being said…does having a sibling with a disability positively affect who I am? Yes, it has helped me to be a kinder, more understanding person and now I am an advocate for persons with DS.

To me, this is not reason enough for me to be happy my sister has DS or think it’s a blessing. I cannot be happy that my sibling is at a disadvantage in society. Society is how it is right now…yes, us advocates are fighting for change…but until change comes, life is what it is. The fact is, persons with DS are not catered for in present society…education, employment, social activities are not set up in such a way to facilitate persons who are deemed “different”, so most things are a battle. Why would I be happy that my sister has constant battles to fight? I accept the struggles, and we face them as a family, but why would I be happy about this?

And the thought that my sister’s struggles are here to make me “a better person” is very one sided…it’s actually quite selfish. What about her? How is DS benefitting her? I believe in accepting the cards life has dealt you and making the best of things. I also wish my sister didn’t have a continuous uphill battle to fight. Hopefully someday, the reality for persons with DS will change and they will be seen as equals and deserving of all the things the rest of us have the privilege to readily access, e.g. education, relationships and employment.

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10 Comments

  1. Josie says:

    I absolutely hear what you are saying. It is one thing too be accepting of the cards you are dealt, but being happy about it is a much greater challenge. Whether someone has Down Syndrome, a chronic illness or debilitating pain from an injury, or any other issue that is holding them back in society’s eyes, it can be a challenge that weighs heavily on shoulders, not just of the person directly affected, but of everyone around that person. What you are feeling is very human, and no one should ever tell you that you should be happy about it. You are allowed to feel exactly as you do. Some days are easier than others, be gentle on yourself on the harder days.

    1. Alicia says:

      Hi Josie,

      Thank you so much for understanding and for your encouragement to take it easy on the hard days. Much appreciated!

      Cheers!

  2. RoDarrick says:

    Hi Alicia, very interesting topic you’ve raised again and I must confess, I always get thrilled every time I checkout a post on this your website. The question of down syndrome and the worldview of the society towards them is disheartening. So, it majorly rests on the friends and family to help cater for them and not to feel too different. Being tossed the not so good things in life is bad and being viewed differently is worse just because of DS, though I do not have anyone of such around me presently, but I do hope this would stop sooner than later.

    1. Alicia says:

      Hi RoDarrick,

      I hope it stops sooner than later too.

      Cheers!

  3. Martin Burt says:

    Wow just stumbled across your powerful blog, and thought I would say thanks for making me stop and think. Although things are getting better there is still a lot that we can do to help people with disabilities live a more normal life. I used to drive a school bus for DS people and the love they can give you is unparalleled. I trust that maybe more will be done in the future especially if you continue to write your inspiring blog posts. I wish you and your sister all the very best in the future.  

    1. Alicia says:

      Hi Martin,

      Thank you so much for your encouraging words. Indeed, I hope things will improve as time goes on.

      Cheers!

  4. roxydog1312 says:

    I cannot imagine what you go through, as I don’t have siblings with DS, so I feel that whatever words I say to try to comfort you and make you feel better about it would be kind of empty.  I do, however, understand when some “well meaning” person says the wrong thing in attempt to say something appropriate.  Of course you don’t want your sister to suffer with the setbacks she has with regard to employment, education, etc.  I do feel badly for you and your sister, that you have to go through some tough stuff because of DS, but I DO feel happy for you that you have each other, and that you have such a great relationship.  I understand that your sister wants to be treated like a PERSON, because she is a person.  And that shouldn’t be too much to ask.  I wish you both good luck and good fortune, and that the hard things you deal with can be eased soon!  Rhonda

    1. Alicia says:

      Thank you Rhonda.

  5. rjkennedy says:

    Interesting article regarding your journey in life dealing with a sister and Down Syndrome. I feel in a situation where you’re a caregiver, it makes you think and reflect on your own life. It’s cool that you gave all your time and attention caring for your sister with Down Syndrome. The uphill battles and struggles they go through to achieve things in life. 

    Do you think there would ever be a complete cure for people with Down Syndrome? With medical technology evolving everyday, whose knows what new developments may rise to the surface. 

    1. Alicia says:

      Hi rjkennedy,

      In my opinion, a cure for DS or any disability is not the solution. Life comes with many challenges, we can’t get rid of them. The issue is that society makes policies independent of those whom society sees as “different” or “less than”.  We need to cater to all people to ensure all persons are educated and thus employable. Let’s start there and see what happens.

      Cheers!

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