On World Sickle-Cell Day, June 19, 2018, I saw a TVC Interview with a guest in the person of Professor Cyril Otoikhan, a Professor of Genetics and Animal Husbandry.
Otoikhan spoke derogatively about sickle-cell patients (warriors). In his words, a sickle-cell child is a waste of time and money. This statement hit me below the belt. I felt very sad because it concerns people like me.
I think it’s very offensive and insensitive and I cannot let this slide without airing my view. After all, everyone is entitled to their views albeit unreasonable and unsettling.
Dear Professor, I watched your full interview on TVC and I understand your point of view: being radical about the approach of dealing with sickle-cell. It is obvious you are a very passionate person, as you are bent on putting an end to the sickle-cell cycle in our society.
However, I have a question for you: what exactly do you think sickle-cell organisations and initiatives do? Have you had any close association with any sickle-cell organisation or initiative? Are you aware of their activities? Or, are you just an armchair critic?
I think you should direct your passion toward lending your knowledge and experience to these organisations who are trying to achieve the goal of reducing or eradicating sickle-cell, rather than making false claims on national platforms.
Contrary to your views, sickle-cell NGOs do not encourage AS-AS genotype couples to get married. Rather, they give advice to these couples about the implications of getting married under such conditions. In addition, they provide genotype testing to young individuals and intending couples. These are the facts, and this is from someone who leads a forward thinking and youth-oriented sickle-cell NGO.
While you mentioned that your foundation is bringing up drastic measures to stop sickle-cell, to be honest, sir, and with all due respect, none of the things that you mentioned are innovative and are different from the things already established organisations are doing or striving to do.
Your supposedly blunt commentary about investing in a sickle-cell child is both reprehensive and unfortunately ignorant. As scientists, we are trained to question things and provide answers. We fail and we repeat, until we get a solution. We don’t say something is impossible, we just haven’t found a solution for it yet. So, I disagree with your statement that genetic diseases are irreversible. Sir, the world is changing. Please, do yourself this favour: enlighten yourself.
You say we are sentimental for disagreeing with you, when in reality you are the one being sentimental as a scientist. Because, as a scientist, you should know better than to give up and accept things the way they are. Where is your ‘why’? Why exactly did you study genetics? To tell sickle-cell kids that they are a waste of time and space? That they are no better than money put in a sachet of water and thrown away? Your statement projects a lack of confidence in yourself as a scientist.
If a sickle-cell child is a waste of money, what will you tell a kid with Down’s syndrome, Autism, or ALS? In case you don’t know, sir, one of the greatest scientists of our time, a physicist, was diagnosed with ALS at an early age, yet he contributed so much to physics. He lived up to the age of 76. He even married and had kids. Would it be foolhardy to say he is a waste of investment? Look him up, sir.
You made a valid point about bone marrow transplantation, the only available cure, about how very expensive it is and about how many people cannot afford it. However, the most important thing is that it is available and it works and there are testimonies of people that it has worked for. I refer you to the amazing work the Sickle-Cell Aid Foundation, Nigeria, is doing on stem cell transplant and finding donors.
A number of scientists like you are using their time and resources to find better ways to treat and cure sickle cell. For instance, the invention of gene editing, CRISPR, Cas 9 technology. It is a continuous work and I believe, with time, something promising and inexpensive will be available for people living with it.
Sickle-cell is difficult to live with, coming from someone living with it. But that is my challenge. That is our challenge. It is part of our story. We are not a waste. We can live. We can love. Sickle-cell can be managed.
Yes, there are people that we have lost. I lost my younger sister many years ago and I lost a good friend in the month of May. But this can also be said for malaria, HIV, and even the common headache, and people are still living with it.
I live with sickle-cell and I am happy with my life, not because things aren’t difficult, not because I’m not often misunderstood, and not because I still struggle with some things, but because I understand I have a purpose and the fact that I am alive is a testimony. I don’t take that life for granted.
We have our challenges. Empathise with us. If you can’t, leave us to live with our challenges. A lot of warriors I know have since been destabilised with that statement and some are still venting about it till today. Also, I wouldn’t be surprised if some have decided to take their lives after being tagged as a waste of investment.
Fellow warriors, you are not a waste. You are not subhuman. You are amazing. You rock. You are kings and queens, and believe me, you are here for a purpose. It may not look like it now and it is so hard, believe me I know, but take it as your challenge. Please don’t throw a pity party. Live. It is hard and it took me a while to attain this peace, and I am still a work in progress, but believe in the God that made you and know that He will not burden you with anything that is greater than you.
Again, you are not a waste. A lot of people can say different things, positive or negative, but it is your responsibility to filter those words, take and use the good ones, and don’t allow the negative ones sink in. Find strength in your weaknesses like every other human being.
Guard your heart and guard your personal space, guard the energy around you and soar.
To parents/caregivers: thank you. You are doing an amazing job. Don’t feel guilty. We are here already. Help us and work with us as we constantly try to make sense of what this “thing” is. Believe in us. Be accessible. Be sensitive. Be emotionally available and we will make you proud. I promise.
To media organisations, both TV and paper, I will like to say that you should properly question your guests before putting them up on national platforms. There are warriors out there, leading organisations, starting initiatives, and they require this platform to share their stories and share their work. But maybe because they may not have the funds, you rarely entertain them. Lend your voice to such organisations, take it as part of your social responsibility to change the perception of people toward us (warriors). It will mean a lot to us and it will help reduce the stigma.
Finally, Professor Otoikhan, I will like to thank you for your statement. Not only have you instilled in me courage for the things I want to do, but you have given some warriors out there a charge. If I had watched your interview a few years ago, I don’t think I would have believed in myself or be comfortable in my own skin. What I am most excited about is that there are warriors that I bet will prove to you and most importantly to themselves that they are resilient and are fighters and will because of you stand up and love themselves. They will live their lives to the fullest. Do you know some warriors have started a campaign on Instagram tagged #inobewaste?
So, thank you. You really don’t understand what you have done by virtue of your ignorant publicity.